SPINAL CORD MEDICINE

OUTCOMES

Outcomes
Following
Traumatic Spinal
CLINICAL PRACTICE GUIDELINE:

Cord Injury:
Clinical Practice Guidelines for
Health-Care Professionals

Administrative and financial support provided by Paralyzed Veterans of America

Consortium for Spinal Cord Medicine
Member Organizations

American Academy of Orthopedic Surgeons

American Academy of Physical Medicine and Rehabilitation
American Association of Neurological Surgeons
American Association of Spinal Cord Injury Nurses
American Association of Spinal Cord Injury Psychologists and Social Workers
American Congress of Rehabilitation Medicine
American Occupational Therapy Association
American Paraplegia Society
American Physical Therapy Association
American Psychological Association
American Spinal Injury Association
Association of Academic Physiatrists
Association of Rehabilitation Nurses
Congress of Neurological Surgeons
Eastern Paralyzed Veterans Association
Insurance Rehabilitation Study Group
Paralyzed Veterans of America
U.S. Department of Veterans Affairs
 CLINICAL PRACTICE GUIDELINES
Spinal Cord Medicine

Outcomes Following
Traumatic Spinal Cord Injury:
Clinical Practice Guidelines
for Health-Care Professionals

Administrative and financial support provided by Paralyzed Veterans of America

© Copyright 1999, Paralyzed Veterans of America

July 1999
No copyright ownership claim is made to any portion of these materials contributed by departments or employees
of the United States Government.

This guide has been prepared based on scientific and professional information known about outcomes
following traumatic spinal cord injury and its treatment in 1999. Users of this guide should periodically
review this material to ensure that the advice herein is consistent with current reasonable clinical practice.
 CLINICAL PRACTICE GUIDELINES iii

Contents

v Foreword

vii Preface

ix Acknowledgments

x Panel Members

xi Contributors

1 Summary of Recommendations

2 The Spinal Cord Medicine Consortium

2 GUIDELINES DEVELOPMENT PROCESS
2 METHODOLOGY
3 EVIDENCE ANALYSIS
GRADING THE EVIDENCE
GRADING THE GUIDELINE RECOMMENDATIONS
GRADING OF PANEL CONSENSUS

7 Recommendations
7 EXPECTED MOTOR RECOVERY OUTCOMES
OVERALL RECOVERY
ZONE-OF-INJURY RECOVERY
AMBULATION POTENTIAL

9 EXPECTED FUNCTIONAL INDEPENDENCE OUTCOMES

EXPECTED FUNCTIONAL OUTCOMES TABLES

23 EXPECTED SOCIAL INTEGRATION OUTCOMES

24 EXPECTED QUALITY-OF-LIFE OUTCOMES

26 Recommendations for Future Research

27 References

30 Index
 CLINICAL PRACTICE GUIDELINES v

Foreword

hat outcomes can be expected after spinal cord injury (SCI)? What extent

W of recovery can be anticipated? What activities can be performed inde-

pendently? What equipment and assistance will be needed? What degree
of productivity and community integration can be accomplished? What quality
of life can be achieved? These are the questions that face each person who
survives SCI. These are the challenges that face each SCI rehabilitation team.
These too are the issues faced by case managers and third-party payers.
The first purpose of these clinical practice guidelines is to provide the best
available answer to the question, “What functional and psychosocial outcomes
can be expected after SCI?” based on evidence in the literature, information from
large SCI databases, and consensus opinions of experts. The second purpose is
to make recommendations regarding the management of outcomes through
appropriate assessment, goal setting, and documentation.
The approach taken by this panel has been to focus on demonstrated,
achievable rehabilitation outcomes rather than on the rehabilitation process.
No attempt has been made to define the components, character, or quantity of
rehabilitation treatments, interventions, or processes that result in successful
outcomes after SCI. Instead, the panel’s aim has been simply to quantify the
outcomes produced by comprehensive systems of spinal cord injury care. These
outcome statistics have been reported in the literature or documented in data-
bases, and they coincide with the consensus expectations of clinical practitioners.
The panel considers the evidence from the Model Systems’ database on functional
outcomes to be very strong descriptive data and quite appropriate for establishing
generalized functional expectancies.
The domains of outcome considered by the panel were broad, including
motor recovery, functional independence, social integration, and quality of life.
Each domain was considered in turn, examining methods of assessment, establish-
ing guidelines for goal setting, and recommending documentation that facilitates
comparing individual and program outcomes with these expectations. By
articulating clear expectations and offering methods of measurement, it is the
hope of the panel that more consistent achievement of these expected outcomes
can be fostered.

Gale Whiteneck, PhD

Chair, Guidelines Development Panel
 CLINICAL PRACTICE GUIDELINES vii

Preface
rom early days in my residency training, the fascination of SCI rehabilitation for

F me has been the direct relationship of the level and severity of the spinal cord
lesion and the functional outcomes that a given patient could eventually achieve.
Years of experience with and observation of highly motivated people with SCI
resulted in empirical correlations that seemed to be helpful in predicting what the
outcome would be for the next patient with a specific level of spinal cord injury.
However, those years of experience also led to a deeply held conviction that a
certain outcome is what “ought to happen.”
Fortunately, some investigators have taken the time to publish outcome studies
that demonstrate actual outcomes by level of injury. These new clinical practice
guidelines (CPG) on outcomes following traumatic spinal cord injury draw
together the relevant literature on outcomes for various levels of SCI and their
resulting impairment. These guidelines suggest expectations of functional out-
come, equipment needs, and hours of personal care and homemaking that may
be appropriate to each level of injury. In a sense, these guidelines set bench-
marks for outcomes that may be achieved by people with certain levels of injury
and what their minimal equipment and attendant care requirements will be at the
first anniversary of the injury.
However, the ideal outcome for each patient may not always be achieved.
Patient outcomes may fall short of target levels of performance because of such
coexistent conditions as cognitive impairment, obesity, age, upper extremity injury,
or pre-existing medical conditions. Secondary conditions such as depression,
spasticity, or contractures also may hinder achievement of long-term outcomes.
Allowance must also be made for personal choice in the target outcomes, allowing
latitude for patients to set their own goals. Personal choice and coexistent con-
ditions are recognized in these guidelines as variables that should be documented
as causing variances from expected outcomes. Documentation of variances
enables a program to evaluate outcomes and compare them to normative data
when they are available. Such comparisons may also define how one population
of patients might differ from another population that generated the normative data.
Another fascination of mine over years of practice is that the rehabilitation
team is able to evaluate the individual patient and define expected outcomes,
then “reverse engineer” the rehabilitation program to achieve those outcomes.
When we were taught that a person with a C7 spared SCI should be able to X, Y,
Z by discharge from acute rehabilitation, we held an ideal process in mind that
has been seriously challenged by the relentless decline in allowable inpatient days
under managed care programs. By taking the “expected outcomes” approach,
the team can define the “destination” or target outcomes and design a variety of
programs or “routes” that could all reach the target goals. This focus on outcomes
estimates the destination by the first anniversary of the person’s injury. It does
not define the “appropriate” length of inpatient stay nor when a person should
reach each destination. Health-care professionals need no longer try to com-
press the whole rehabilitation program into fewer inpatient days. Frustration for
the health-care provider, patient, and family member may therefore be decreased.
Creativity in program design is encouraged, and the person with SCI is given
the freedom to pace his or her progress as allowed by emotional and physical
recovery from the trauma of the loss.
The intended audience for these guidelines is interdisciplinary team members,
but many others will find them useful. Trainees in each of the professions will
benefit from the comprehensive review of the literature and clarity of presentation.
Life-care planners, case managers, and claims adjusters will benefit from seeing
what the rehabilitation field has taken as the “medically necessary and appropriate”
outcomes for each level of injury. Patients and their families will benefit from
viii OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

seeing what a number of their peers have been able to achieve and what is not
recommended because of lack of efficacy data. The estimated hours of attendant
care will assist the patient, the family, and their counselors in the optimal allocation
of resources for safety and conservation.
The consortium continues its commitment to providing guidelines based on
the best research currently available in order to assist people with SCI to achieve
optimal quality of life. We can expect new developments in technology and reha-
bilitation techniques in the future. When such advances have been demonstrated
to alter expected outcomes through studies with vigorous research designs and
reliable measurement tools, this document will be updated.

Kenneth C. Parsons, MD
Chair, Steering Committee
Consortium for Spinal Cord Medicine
 CLINICAL PRACTICE GUIDELINES ix

Acknowledgments

he chair and members of the guideline development panel wish to express

T special appreciation to the individuals and professional organizations who were

involved in the Consortium for Spinal Cord Medicine and to the expert clinicians
and health-care providers who reviewed the draft document. A special thanks to
the consumers, advocacy organizations, and the staffs of the numerous medical
facilities and spinal cord injury rehabilitation centers who contributed their time
and expertise to the development of these guidelines. The panel also expresses
appreciation to John E. Dahlberg and Larry Cervelli for their cogent advice on
technical aspects of the document.
Andrea K. Biddle and her Colleagues at the Department of Health Policy and
Administration, University of North Carolina at Chapel Hill, served as the
methodology team. They masterfully conducted the initial and secondary-level
literature searches, evaluated the quality and strength of the scientific evidence,
constructed evidence tables, and graded the quality of research for all identified
literature citations.
Members of the Consortium steering committee, representing 18 professional,
payer, and consumer organizations, were joined in the guidelines development
process by 50 expert reviewers. Through their clinical analysis and thoughtful
comments, the recommendations were refined and additional supporting evidence
from the scientific literature was identified. The quality of the technical assistance
from these dedicated reviewers contributed significantly to the professional
consensus building that we hope to achieve through the guidelines development
process. Attorney William H. Archambault, of Goodman, West, and Filetti,
Charlottesville, Virginia, conducted a comprehensive analysis of the legal and
health policy issues associated with this complex, multifaceted topic.
The guidelines development panel is grateful for the many technical support
services provided by various departments of the Paralyzed Veterans of America
(PVA). In particular, the panel recognizes J. Paul Thomas and Dawn M. Sexton
in the Consortium coordinating office for their help in organizing and managing
the process; John L. Carswell for his astute analysis of the draft recommendations;
Fred Cowell in the Health Policy Department for his cogent comments reflecting
the consumer perspective; James A. Angelo, Patricia E. Scully, and Sue England
in the Communications Department for their guidance in writing, formatting,
and creating art; and medical editor Joellen Talbot for her excellent technical
review and editing of the CPG. Appreciation is expressed for the steadfast
commitment and enthusiastic advocacy of the entire PVA board of directors and
of PVA’s senior officers, including National President Homer S. Townsend,
Immediate Past President Kenneth C. Huber, Executive Director Gordon H.
Mansfield, and Deputy Executive Director John C. Bollinger. Their generous
financial support has made the CPG Consortium and guideline development
process a successful venture.
x OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

Panel Members

Gale Whiteneck, PhD Allen W. Heinemann, PhD

(Chair) (Health Services Research)
(Research) Rehabilitation Institute of Chicago
Craig Hospital Northwestern University Medical School
Englewood, Colorado Department of Physical Medicine
and Rehabilitation
Chicago, Illinois
Carole Adler, BA, OTR
(Occupational Therapy)
Santa Clara Valley Medical Center Kelly Johnson, RN, MSN, CFNP, CRRN
San Jose, California (Nursing, Spinal Cord Injury)
Craig Hospital
Englewood, Colorado
Andrea K. Biddle, PhD, MPH
(Methodologist)
University of North Carolina at Chapel Hill Ralph J. Marino, MD
Department of Health Policy (Physical Medicine and Rehabilitation)
and Administration Department of Rehabilitation Medicine
Chapel Hill, North Carolina Mount Sinai School of Medicine
New York, New York

Sharon Blackburn, PT
(Physical Therapy, Spinal Cord Injury) Harley Thomas, BA
Craig Hospital (Consumer)
Englewood, Colorado Paralyzed Veterans of America
Washington, D.C.

Michael J. DeVivo, DrPH

(Epidemiology) Robert L. Waters, MD
Spain Rehabilitation Center (Steering Committee Liaison)
Birmingham, Alabama (Orthopedic Surgery)
Rancho Los Amigos Medical Center
Downey, California
Stephen M. Haley, PhD, PT
(Physical Therapy)
Boston University Gary M. Yarkony, MD
Sargent College of Health (Physical Medicine and Rehabilitation)
and Rehabilitation Sciences Schwab Rehabilitation Hospital
Boston, Massachusetts Chicago, Illinois

Robert D. Hendricks, PhD

(Health Systems Specialist)
VA Puget Sound Health Care System
National Spinal Cord Injury and
Disorders Strategic Health Group
Seattle, Washington
 CLINICAL PRACTICE GUIDELINES xi

Contributors

Consortium Member Organizations and American Psychological Association

Daniel Rohe, PhD
Steering Committee Representatives
American Academy of Orthopedic Surgeons
Robert L. Waters, MD American Spinal Injury Association
Kenneth C. Parsons, MD

American Academy of Physical Medicine and Rehabilitation

Margaret A. Turk, MD Association of Academic Physiatrists
Kristjan T. Ragnarsson, MD

American Association of Neurological Surgeons

Paul V. C. McCormick, MD Association of Rehabilitation Nurses
Audrey Nelson, PhD, RN

American Association of Spinal Cord Injury Nurses

Audrey Schmerzler, RN, MSN Congress of Neurological Surgeons
Paul V. C. McCormick, MD

American Association of Spinal Cord Injury Psychologists and Social

Workers Eastern Paralyzed Veterans Association
Helen Bosshart, LCSW Vivian Beyda, DrPH

American Congress of Rehabilitation Medicine Insurance Rehabilitation Study Group

Marilyn Pires, MS, RN, CRRN–A Louis A. Papastrat, MBA, CDMS, CCM

American Occupational Therapy Association Paralyzed Veterans of America

Susan L. Garber, MA, OTR, FAOTA R. Henry Bodenbender, MD

American Paraplegia Society U.S. Department of Veterans Affairs

Todd A. Linsenmeyer, MD Margaret C. Hammond, MD

American Physical Therapy Association

Montez Howard, PT, MEd
xii OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

Expert Reviewers Association of Academic Physiatrists

Steven Kirschblum, MD
American Academy of Orthopedic Surgeons Michael Y. Lee, MD
Robert Waters, MD Michael M. Priebe, MD

American Academy of Physical Medicine and Rehabilitation Association of Rehabilitation Nurses

David Chen, MD Christina M. Mumma, PhD, RN, CRRN
Daniel P. Lammertse, MD
Michael M. Priebe, MD
Eastern Paralyzed Veterans Association
Selig Landsman
James J. Peters
American Association of Spinal Cord Injury Nurses
Melvyn Tanzman
Kathleen L. Dunn, MS, RN, CRRN
Paul Tobin

American Association of Spinal Cord Injury Psychologists and Social

Insurance Rehabilitation Study Group
Workers
Louis A. Papastrat, MBA, CDMS, CCM
Stanley H. Ducharme, PhD
James Urso
Marcia J. Scherer, PhD, MPH
Jan Wood, CRC, CDMS, CCM
Hugh B. Taylor, LCSW

Paralyzed Veterans of America

American Congress of Rehabilitation Medicine
Ann C. Adair, RN, BSN, MEd
Doreen Casuto, RN
Craig Bash, MD
Marilyn Pires, MS, RN, CRRN–A
Karen E. Bridges, RN, BSN

American Occupational Therapy Association

Janine Evert, MOT, OTR U.S. Department of Veterans Affairs
Theresa L. Gregorio-Torres, MA, OTR Bernard A. Nemchausky, MD, FACP
Kirsten M. Kohlmeyer, MS, OTR/L Sunil Sabharwal, MD
Robert Woolsey, MD

American Paraplegia Society

Douglas B. Barber, MD
Steven Kirschblum, MD Special Reviewers
Daniel P. Lammertse, MD
Larry Cervelli, OTR
Paradigm Health Corporation
American Physical Therapy Association
Sarah A. Morrison, PT
John E. Dahlberg, MA
Martha F. Somers, MS, PT
Rehabilitation Consultant
James D. Tomlinson, MS, PT

American Psychological Association

Frances Marks Buck, PhD
Paul R. Sachs, PhD, ABPP, ABPN

American Spinal Injury Association

Samuel G. Colachis, III, MD
Michael Y. Lee, MD
Kenneth C. Parsons, MD

Summary of Recommendations
Expected outcomes and their measurement
are divided into four domains—motor recovery,
functional independence, social integration, and
quality of life. Within each domain, recommenda-
tions are offered regarding appropriate assessment,
goal setting, and documentation. An overarching
principle for all outcome assessment and documen-
tation is that the measurement instruments should
be standardized, well-validated, and reliable.
Expected Motor Recovery Outcomes
1. Perform a neurological examination to establish
the diagnosis as soon as possible after a suspected
spinal cord injury, ideally within 6 hours.
2. Perform a comprehensive neurological examination
according to International Standards for
Neurological and Functional Classification
between 3 and 7 days after injury.
3. Monitor neurological status periodically until
recovery has reached a plateau.
4. After neurological plateau has been reached,
conduct periodic evaluations of neurological
status throughout the individual’s lifetime.
Expected Functional
Independence Outcomes
5. Establish short- and long-term functional goals
with the participation of the person served based
upon a comprehensive, individualized assessment
by a team of health-care professionals experienced
in the care and treatment of people with SCI.
6. Monitor functional ability throughout the rehabili-
tation process, modifying treatment strategies to
maximize functional outcome.
CLINICAL PRACTICE GUIDELINES 1
7. After achievement of functional goals, conduct
periodic evaluations of functional status throughout
the individual’s lifetime.
8. Document deviations in the achievement of func-
tional outcomes (with reference to the normative
data in Table 6) by groups of individuals receiving
rehabilitation. Address such deviations in terms of
improvement of clinical processes of care or unique
population characteristics requiring risk adjustment.
Expected Social Integration
Outcomes
9. After the initial acute care and rehabilitation phase,
discharge individuals with SCI back into the
community.
10. Focus on providing opportunities for societal
participation in meaningful roles.
11. Document deviation in social participation and
integration (with reference to the normative data
in Figures 5-8) by groups who have completed
rehabilitation. Address such deviations in terms
of improvement of clinical processes of care or
unique population characteristics requiring
risk adjustment.
Expected Quality-of-Life Outcomes
12. Assess quality of life for individuals with SCI using
direct perceptions of the individual involved.
13. Facilitate opportunities for optimal quality of life
within the full continuum of health-care and
rehabilitation programs.
2 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
The Spinal Cord Medicine Consortium
Guidelines Development Process
The guidelines development process adopted
by the Spinal Cord Medicine Consortium consists
of 12 steps, leading to panel consensus and organi-
zational endorsement. After the steering committee
chooses and explicates a topic, a panel of experts
is selected who have demonstrated independent
scientific investigation, publication, and leadership
in the topic area. Following a detailed explication
and specification of the topic by select steering
committee and panel members, the methodology
team review the international literature, prepare
evidence tables, grade and rank the quality of
research, and conduct statistical meta-analyses and
other specialized studies, as warranted. The panel
chairperson then assigns specific sections of the
topic to the panel members, based upon their area
of expertise, and writing begins on each compo-
nent using the references and other materials fur-
nished by the methodology team.
The panel members complete their sections,
and a draft document is generated during the first
meeting of the panel. The panel incorporates new
literature citations or other evidence-based infor-
mation not previously available. At this point,
charts, graphs, algorithms, and other visual aids, as
well as a complete bibliography, are added, and the
full document is sent to legal counsel for review.
After legal review to consider antitrust, restraint-
of-trade, and health policy matters, the draft document
is reviewed by predetermined clinical experts from
each of the consortium organizations plus other
select clinical experts and consumers. The review
comments are assembled in a database and analyzed,
and the document is revised to reflect the reviewers’
comments. Following a second legal review, the
document is distributed to all consortium organiza-
tion governing boards. Final technical details are
negotiated among the panel chair, members of the
organizations’ boards, and expert panelists. If sub-
stantive changes are required, the draft is given a
final legal review. The document is then ready for
editing, formatting, and preparation for publication.
The benefits of clinical practice guidelines for
the spinal cord medicine practice community are
numerous. Among the more significant applica-
tions and results are the following:
Clinical practice options and care standards
Medical and health professional education and
training
Building blocks for pathways and algorithms
Evaluation studies of clinical practice
guidelines use and outcomes
Research gap identification
Cost and policy studies for improved
quantification
Primary source for consumer information and
public education
Knowledge base for improved professional
consensus building
Methodology
The methodology team’s strategy for finding
evidence relating to the management of functional
outcomes in individuals with SCI closely resembles
the methods recommended by the Agency for
Health Care Policy and Research (AHCPR) and by
the National Academy of Sciences’ Institute of
Medicine. First, a preliminary literature search of
the MEDLINE database from 1966 to the present
was conducted. The purpose of this initial search
was to enable the methodology team to estimate
the volume of literature available on the subject
and to identify the main issues associated with
the topic.
The results of this initial search were discussed
at a panel meeting held on March 13–14, 1997, in
Denver, Colorado. At this meeting, the methodology
team worked with the panel chair and members to
develop the topic outline and to define specifically
the literature search topics. Key topic areas iden-
tified were:
Functional outcomes and rehabilitation
expectations for individuals with SCI
Interventions, complications, and equipment
that affect (either positively or negatively)
expected functional outcomes
Types of personnel and equipment necessary
to achieve functional goals
Studies of outcome instruments (e.g., the
Functional Independence Measure (FIMSM)
and the Craig Handicap Assessment and
Reporting Technique (CHART)).
Time-related considerations in determining
the prognosis of expected functional gains

Patient satisfaction, quality of care, quality of
life, self-care, and self-concept
Comorbidities that limit achievement of
functional outcomes or quality of life
Subsequent consultation with the panel chair
clarified that articles of particular interest were
those that analyzed and discussed functional
outcomes by injury level. Topics ruled out of
consideration were articles evaluating drugs,
programs, or devices.
The panel specified the guidelines’ primary
audience as the interdisciplinary health-care
providers who treat individuals with SCI. Third-
party payers, including case managers and
discharge planners, may find the outcomes and
resource guidelines useful when working with
health-care providers to develop rehabilitation
strategies. Consequently, only articles dealing with
adults and adolescents (age ≥ 13 years) were
included. Animal studies, though generally
excluded, were used in several instances where
they constituted the only evidence to support
conclusions regarding biological mechanisms. The
search was limited to articles published in English.
Study designs employing clinical trials (randomized
and nonrandomized), cohort studies, case control,
case series, and cross-over studies were included.
Case reports, instructional articles, and “n-of-one”
studies were excluded.
Though qualitative research (e.g., that employing
phenomenological, anthropological, and grounded
theory approaches) provides important and useful
insights into developing realistic rehabilitation
strategies with SCI survivors, evidence-based medi-
cine and clinical practice guidelines development do
not yet recognize the evidence value of qualitative
research. Consequently, articles describing qualitative
research were excluded from the systematic
literature review.
Review articles and overview articles examining
functional outcomes for individuals with SCI were
identified and retrieved if functional outcomes were
topics of discussion. It is important to note that,
although review articles were included, they were
not intended for use as evidence for the guidelines.
Rather, they served to orient the methodology
team to the topic, to identify “gray literature,” and,
finally, to cross-reference with the literature search
to ensure that all relevant articles on the topic had
been identified and retrieved for analysis.
Key topic areas and words identified by the
panel were translated, when necessary, into Index
Medicus subheadings (MeSH subheadings) to
search the MEDLINE (1966–1999) and the
CINAHL (1982–1999) databases. Whenever
CLINICAL PRACTICE GUIDELINES 3
possible, “exploded” MeSH subheadings were used,
allowing the inclusion of more relevant literature
than would be discovered using text word searches.
Second-level searches were conducted using the
major and minor MeSH subheadings retrieved
from relevant articles.
More than 480 articles were identified through
this search and their abstracts were reviewed, using
the inclusion/exclusion criteria, for relevance to the
management of functional outcomes. Of these
articles, 145 articles met the inclusion/exclusion
criteria and were retrieved. An additional 45 articles
were retrieved for further analysis because they
either did not have an abstract or their relevance
was unclear.
Standardized data forms were used to extract
relevant information from the articles found in the
literature searches and the extracted information
was then compiled into evidence tables. Once the
evidence tables had been created, the methodology
team, panel chair, and PVA staff categorized the
articles according to the guideline topic areas.
The evidence tables and articles then were sent to
the panel members charged with writing the specific
guideline sections. This enabled panel members,
when drafting their individual sections, to rely on
the available evidence base relevant to their topic
area. Panel members were strongly encouraged not
only to rely on the data presented in the evidence
table, but to critically review the articles. During
the subsequent period, the methodology team
responded to queries from the panel chair and
members. The methodology team reviewed addi-
tional articles identified by panel members and
created and disseminated supplemental evidence
tables as necessary.
Evidence Analysis
A number of approaches exist for evaluating
the quality of research studies and the evidence
derived from them (Feinstein, 1985; Sackett, 1989).
Most employ a hierarchy of evidence that places
more weight on certain study designs than others.
Generally, the greatest weight is placed on
randomized, controlled trials, followed by obser-
vational studies, uncontrolled case series, and
finally case reports.
GRADING THE EVIDENCE
For all evidence presented in this guideline,
the methodology team employed the hierarchy
first discussed by Sackett (1989) and later enhanced
by Cook et al. (1992) and the U.S. Preventive
Health Services Task Force (1996). These levels
of scientific evidence are presented in Table 1.
Additionally, each study was evaluated for internal
4 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
and external validity. Factors affecting internal
validity (i.e., the extent to which the study provides
valid information about the patients and conditions
studied) included sample size and statistical power;
selection bias and inclusion criteria; selection of
control groups, if any; randomization methods and
comparability of groups; definition of interventions
and exposures; definition of outcome measures;
attrition rates; confounding variables; data collection
methods and observation bias; and methods of
statistical analysis. External validity (i.e., the
extent to which the study findings are generalizable
to conditions other than the setting of the study)
was evaluated through an examination of the
characteristics of the study population, the clinical
setting, and the environment. The resulting rankings
were provided to the panel members during the
writing and deliberation process.
TA B L E 1
Hierarchy of the Levels of Scientific Evidence
Level Description
I Large randomized trials with clear-cut
results (and low risk of error)
II Small randomized trials with uncertain
results (and moderate to high risk of error)
III Nonrandomized trials with concurrent or
contemporaneous controls
IV Nonrandomized trials with historical controls
V Case series with no controls
Sources: Sackett, D. L., Rules of evidence and clinical recommendation on
the use of antithrombotic agents; Chest 95 (2 Suppl) (1989): 2S–4S; and
the U.S. Preventive Health Services Task Force, Guide to Clinical
Preventative Services, 2d ed. (Baltimore: Williams and Wilkins, 1996).
The Sackett rating scheme, as well as other
grading schemes, contains an implicit hierarchy of
quality indicating greater value for specific study
designs than for others. In particular, randomized
controlled trials serve as the “gold standard,” with
designs employing nonrandomized control groups
(e.g., case-control studies) and large prospective/
retrospective cohorts receiving relatively less
evidence value.
This somewhat simplistic approach ignores
several issues that are of paramount importance to
the evidence presented in these guidelines. The
first is that particular research topics may not be
amenable to the use of randomized, controlled
clinical trials. For example, avenues of research
examining the use of an intervention, such as the
evaluation of neurological recovery and expected
gains in function and social integration, are most
frequently (and appropriately) studied using large,
multicenter cohorts or case-control designs. Thus,
even well-designed and appropriate studies will be
rated as “lower” quality on Sackett and other
schema and inappropriately appear to be less
credible and less likely to be adopted by clinicians
(Lomas, 1993).
Additionally, the Sackett rating scheme lacks the
ability to distinguish, within a particular category,
well-conducted studies from poorly conducted
ones. Consequently, poorly conducted studies
mistakenly appear to be more credible (i.e., of
greater evidence value) than they are.
Finally, recommendations that have strong
theoretical or applied clinical bases (e.g., the
monitoring of functional ability throughout the
rehabilitation process and modification of treatment
to maximize outcomes) frequently will not have
strong, randomized clinical trial research evidence
yet represent best/appropriate practice based on
large, well-conducted, prospective cohort studies.
In crafting these recommendations, the panel has
attempted to incorporate the most appropriate
types of scientific evidence. Because the traditional
rating schemes may not appropriately evaluate and
rank the evidence, care has been taken to outline the
details regarding the quality of the research, including
internal and external validity considerations.
GRADING THE GUIDELINE RECOMMENDATIONS
After panel members had drafted their sections
of the guidelines, each recommendation was graded
according to the level of scientific evidence support-
ing it. The framework used by the methodology
team is outlined in Table 2 (Sackett, 1989; U.S.
Preventive Health Services Task Force, 1996). It
should be emphasized that these ratings, like the
evidence table ratings, represent the strength of
the supporting evidence, not the strength of the
recommendation itself. The strength of the rec-
ommendation is indicated by the language
describing the rationale.
TA B L E 2
Categories of the Strength of Evidence
Associated with the Recommendations
Category Description
A The guideline recommendation is supported by
one or more level I studies
B The guideline recommendation is supported by
one or more level II studies
C The guideline recommendation is supported
only by level III, IV, or V studies
Sources: Sackett, D. L., Rules of evidence and clinical recommendation on
the use of antithrombotic agents; Chest 95 (2 Suppl) (1989): 2S–4S; and
the U.S. Preventive Health Services Task Force, Guide to Clinical
Preventative Services, 2d ed. (Baltimore: Williams and Wilkins, 1996).

Category A requires that the recommendation
be supported by scientific evidence from at least
one properly designed and implemented random-
ized, controlled trial, providing statistical results
that consistently support the guideline statement.
Category B requires that the recommendation be
supported by scientific evidence from at least one
small randomized trial with uncertain results; this
category also may include small randomized trials
with certain results where statistical power is low.
Category C recommendations are supported by
either nonrandomized, controlled trials or by trials
for which no controls are used.
If the literature supporting a recommendation
comes from two or more levels, the number and
level of the studies are reported (e.g., in the case
of a recommendation that is supported by two
studies, one a level III, the other a level V, the
“Scientific evidence” is indicated as “III/V”).
In situations where no published literature exists,
consensus of the panel members and outside expert
reviewers was used to develop the recommendation
and is indicated as “Expert consensus.”
CLINICAL PRACTICE GUIDELINES 5
GRADING OF PANEL CONSENSUS
The level of agreement with the recommendation
among panel members was assessed as either low,
moderate, or strong. Each panel member was
asked to indicate his or her level of agreement on
a 5-point scale, with 1 corresponding to neutrality
and 5 representing maximum agreement. Scores
were aggregated across the panel members and an
arithmetic mean was calculated. This mean score
was then translated into low, moderate, or strong,
as shown in Table 3. A panel member could abstain
from the voting process for a variety of reasons,
including, but not limited to, lack of expertise
associated with the particular recommendation.
TA B L E 3
Levels of Panel Agreement with the
Recommendations
Level Mean Agreement Score
Low 1.0 to less than 2.33
Moderate 2.33 to less than 3.67
Strong 3.67 to 5.0

Recommendations
xpected outcomes and their measurement for
E individuals with traumatic spinal cord injury are
divided into four domains—motor recovery,
functional independence, social integration, and
quality of life. Within each domain, recommendations
are offered regarding appropriate assessment, goal
setting, and documentation. An overarching princi-
ple for all outcome assessment and documentation
is that the measurement instruments should be
standardized, well-validated, and reliable. It is
beyond the scope of these clinical practice guidelines
to review all the validity and reliability literature
related to measurements of impairment, activity
restrictions, societal role functioning, and quality
of life. The reader is referred to texts such as
Fuhrer (1996) for a broad overview of possible
measures and to specific literature reviews for each
of the four outcome domains—e.g., for quality of
life one might refer to Dijkers (1997), Evans et al.
(1994), or Fuhrer (1996).
Expected Motor Recovery Outcomes
1. Perform a neurological examination to
establish the diagnosis as soon as possible
after a suspected spinal cord injury, ideally
within 6 hours. (Scientific evidence—III/V;
Grade of recommendation—C; Strength of panel
opinion—Strong)
The diagnosis of spinal cord injury must be
made promptly in order to initiate early interven-
tions, to minimize the neurological impairment, and
to prevent secondary complications. The initial
neurological examination serves as a baseline for
evaluation over the first hours to days after injury.
It should be sufficiently detailed to detect deteriora-
tion in neurological status, using the International
Standards for Neurological and Functional
Classification of Spinal Cord Injury (American
Spinal Injury Association [ASIA], 1996) as the
clinical situation allows. Deterioration should ini-
tiate reevaluation of spinal column stability and
spinal cord compression and may be an indica-
tion for surgical or medical intervention.
An extensive body of research using animal
models of SCI indicates that secondary conditions
such as ischemia, edema, and lipid peroxidation
contribute to the neurological deficit after traumatic
SCI (Tator and Fehlings, 1991). Studies also
indicate that preservation of a small proportion of
spinal axons can support neurological recovery
(Young, 1993). Methylprednisolone, a potent
inhibitor of lipid peroxidation, has been shown to
CLINICAL PRACTICE GUIDELINES 7
improve recovery of motor function below the
injury level if initiated within 8 hours after injury
(Bracken and Holford, 1993; Bracken et al., 1997).
Studies investigating acute spinal cord com-
pression injury in rats have demonstrated that
decompression is beneficial, but recovery is
reduced with increasing force and duration of
compression (Dolan et al., 1980). In a canine
model of compression of the spinal cord, paralysis
recovered if the compression was released within
9 hours (Tarlov, 1954). Early decompression in
traumatic SCI is therefore theoretically beneficial,
although it has not been investigated in controlled
studies in humans. Closed reduction of cervical
facet dislocations using high weight traction and
close neurological monitoring has been accom-
plished without neurological compromise (Cotler
et al., 1993). Several subjects improved neuro-
logically subsequent to the reduction, although
the improvement could not be directly attributed
to the intervention given the uncontrolled nature
of the study.
2. Perform a comprehensive neurological exami-
nation according to International Standards
for Neurological and Functional Classification
between 3 and 7 days after injury. (Scientific
evidence—V; Grade of recommendation—C;
Strength of panel opinion—Strong)
The initial examination in the emergency
department may be difficult if the patient has
sustained other injuries or is under the influence
of drugs or alcohol. Neurologic status may change
over the first few days and is influenced by resus-
citative procedures. The period from 72 hours to
1 week postinjury is the earliest time postinjury
when detailed neurological evaluations can reliably
be performed to predict neurological recovery
(Brown et al., 1991; Herbison et al., 1992; Maynard
et al., 1979).
A standardized evaluation and classification of
SCI is important to facilitate communication among
caregivers and researchers. The International
Standards for Neurological and Functional
Classification of Spinal Cord Injury (ASIA,
1996) has gained widespread acceptance as the
preferred system for SCI. The examination ele-
ments (e.g., the sensory and motor testing) are
reliable, but training and experience are needed to
classify individuals correctly according to the stan-
dards (Cohen et al., 1996).
8 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
3. Monitor neurological status periodically until
recovery has reached a plateau. (Scientific
evidence—monitoring frequency: None; overall
recovery: V; zone-of-injury recovery: V; ambulation
potential: V; Grade of recommendation—monitor-
ing frequency: expert consensus; overall recovery:
C; zone-of-injury recovery: C; ambulation potential:
C; Strength of panel opinion—Strong)
The literature does not specifically address the
optimum timing or frequency of neurological
assessments after traumatic SCI. The frequency of
assessments depends upon the rate of change of
neurological function and will decrease with
greater time postinjury. To document neurological
recovery (e.g., where impairment is the outcome),
evaluations should be conducted using established
measures at fixed time points after injury. Common
time points are 4–6 weeks, 6 months, and 1 year
after injury (Bracken and Holford, 1993; Bracken
et al., 1997; Geisler et al., 1991; Herbison et al.,
1992; Waters et al., 1994a; Waters et al., 1994b).
OVERALL RECOVERY
Several studies have documented recovery
over the first few months after traumatic SCI. At
the group level, for those with incomplete injuries,
one-half to two-thirds of the 1-year motor recovery
occurs within the first 2 months after injury
(Bracken and Holford, 1993; Bracken et al., 1997;
Dam et al., 1997; Geisler et al., 1991). Recovery
continues, but slows after 3–6 months (Waters et
al., 1994a; Waters et al., 1994b). Recovery of
motor function has been documented up to 2
years postinjury (Ditunno et al., 1992; Piepmeier
and Jenkins, 1988; Waters et al., 1994a).
Lengths of stay (LOS) for SCI have been
decreasing, both for acute care and rehabilitation.
In the Model SCI Systems, comparing the
1973–1977 to 1989–1992 time periods, average
acute care LOS decreased from 25 to 19 days,
while rehabilitation LOS decreased from 122 to
63 days (Stover et al., 1995). An admission-to-
discharge time interval therefore represents a
changing segment of time during a period of rapid
recovery in SCI. Although these intervals are use-
ful for clinical purposes, neurological assessments
at such variable and diminishing time intervals do
not provide useful information concerning the
course of neurological recovery.
ZONE-OF-INJURY RECOVERY
Recovery of motor function in the zone of
injury has been studied in complete tetraplegia.
Because there are no key muscles in the thoracic
region and lumbar level lesions usually represent
cauda equina injuries, it is not possible to clinically
study zone-of-injury motor recovery in paraplegia.
Studies have focused on recovery in muscles with
less than grade 3 strength located one level below
antigravity (grades 3 or better) muscles. Muscles
with some motor power below an antigravity mus-
cle have a better prognosis than muscles with no
motor power (Table 4). Of muscles with some
initial strength (grade 1 or 2), 90 percent will
reach antigravity strength by 1 year (Ditunno et
al., 1992; Mange et al., 1990; Mange et al., 1992).
Of the group with zero initial strength, 64 percent
will gain antigravity strength by 2 years (Ditunno
et al., 1992; Wu et al., 1992).
Recovery is faster in those with incomplete
injuries. The median time to reach antigravity
strength is 2 months for motor complete individuals,
but only 2 weeks for motor incomplete subjects
(Mange et al., 1990).
TA B L E 4
Percent Recovery to Grade 3 or Better in
Complete Tetraplegia
Initial Strength Time Postinjury
First-level Muscle* 2 Months 6 Months 12 Months
Grade 1 or 2 50% 82% 90%
Grade 0 11% 36% 45%**
*Most rostral key muscle with < grade 3 strength
**Recovery continues past 1 year, reaching 64 percent by 2 years
Sources: Ditunno et al., 1992; Mange et al., 1990; Mange et al., 1992; Wu et
al., 1992
Evaluation of zone-of-injury recovery using 1
month postinjury as a baseline indicated in one
study continued good prognosis for recovery in
muscles with some activity (Waters et al., 1993).
In individuals with motor complete tetraplegia, 97
percent of upper extremity key muscles with a
muscle grade 1 or 2 at 1 month recovered to at
least grade 3 by 1 year. Only 10 percent of upper
extremity muscles with no motor power at 1 month
reached grade 3 strength by 1 year. This recovery
occurred almost exclusively at the first level below
the motor level. The recovery rate for first level
versus lower level muscles with zero strength at 1
month was 30 percent versus 0.5 percent.
AMBULATION POTENTIAL
Based upon neurological assessment within
the first week of injury, 80 percent to 90 percent of
those with complete injuries (ASIA A) will remain
complete. Of those who convert to incomplete
injuries, only 3 percent to 6 percent will recover
 CLINICAL PRACTICE GUIDELINES 9

F I GURE 1 severity. Prognosis is poorer in those above 50–60

Prognosis for Ambulation after
Traumatic Spinal Cord Injury
years of age (Burns et al., 1997; Daverat et al.,
100 1988; Penrod et al., 1990; Waters et al., 1994a;
95
90 Waters et al., 1994b).
80 The preceding information on expected
75
Percent Ambulatory

70 neurological recovery can help in setting long-

term goals during the acute period. For example,
60
50 someone with a C5 motor level at 1 month, with
50
grade 2/5 wrist extensors, would be expected to
40 function at the C6 level by 1 year.
30
20
10 4. After neurological plateau has been reached,
3
0 conduct periodic evaluations of neurological
ASIA A ASIA B* ASIA C** ASIA D status throughout the individual’s lifetime.
Initial ASIA Impairment Scale (Scientific evidence—V; Grade of recommendation—
* Prognosis influenced by presence or absence C; Strength of panel opinion—Strong).
of pin sensation (see text)
**Prognosis influenced by age (see text) Recovery of motor function has been documented
up to 2 years postinjury (Ditunno et al., 1992;
Waters et al., 1994a). Changes in neurologic status
functional strength in the lower extremities (Ditun-
may continue beyond 2 years (Piepmeier and
no et al., 1995; Maynard et al., 1979).
Jenkins, 1988). Deterioration also may occur.
Sensory incomplete, motor complete (ASIA B)
Late neurological deterioration may occur due to
individuals comprise about 10 percent of all new
cord tethering or syringomyelia (Wang et al., 1996).
injuries. This group has a mixed prognosis.
Secondary conditions, particularly carpal tunnel and
Overall, approximately 50 percent of those who
ulnar nerve entrapment syndromes, are common
are initially classified as ASIA B will become ambu-
in individuals with paraplegia (Davidoff et al., 1991).
latory (Maynard et al., 1979). Prognosis depends
These conditions may result in changing capacities
upon the type of sensory sparing. Those motor
and needs. Periodic evaluations of neurological
complete subjects with preserved sacral pin sensation,
status may facilitate early detection and intervention
indicating partial function in the spinothalamic
for such needs. In selected individuals with
tracts, have a prognosis for lower extremity recovery
tetraplegia, function may be enhanced by upper
approaching that of motor incomplete individuals
extremity reconstructive procedures (Treanor et
(Crozier et al., 1991). For those without pin
al., 1992; Vanden Bergh et al., 1991). Recent
sensation, prognosis for recovery of ambulation
developments in neuroprostheses may allow for
ranges from 10 percent to 33 percent (Crozier
functional abilities beyond those achievable by
et al., 1991; Folman and el Masri, 1989).
reconstructive procedures alone (Crago et al.,
The majority of individuals with motor incom-
1998; Kilgore et al., 1997).
plete injuries upon initial examination recover the
Individuals with SCI should receive periodic,
ability to ambulate. For individuals with motor
routine health evaluations for non-SCI and SCI-
incomplete, ASIA C injuries, about 75 percent will
related health needs (Lanig et al., 1996). The
become community ambulators (Burns et al., 1997;
purpose of periodic evaluation includes screening
Curt and Dietz, 1997; Roth et al., 1990; Waters et
for secondary impairment and secondary disability
al., 1994a; Waters et al., 1994b). A community
and early detection of neurologic changes. The
ambulator is generally defined as a person using
intervals for periodic health screening must be
braces and crutches when walking is the primary
individualized, but at a minimum should follow
mode of mobility in the home and community.
the recommendations of the U.S. Preventive
Age and the amount of preserved spinal cord
Services Task Force (1996) as outlined for the
function below the lesion influence recovery of
general population.
ambulation. The greater the amount of function
preserved, the better the prognosis for recovery of
ambulation. At minimal levels of initial function, Expected Functional
recovery is generally poor (Daverat et al., 1988; Independence Outcomes
Waters et al., 1994a; Waters et al., 1994b). The establishment of expected functional
Prognosis is excellent for those initially classified outcome goals, the assessment of progress toward
as ASIA D. Younger individuals have a better those goals, and the maintenance of functional
prognosis for ambulation with a similar injury abilities over a lifetime form a complex process.
Many authors have suggested a predictable rela-
10 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
tionship between the level (and completeness) of
injury and the likely functional independence a
person with SCI can be expected to achieve (Adler,
1996; Colorado Spinal Cord Injury Early Notification
System, 1995; Craig Hospital, 1989).
Although the typical degree of independence
expected for each level of SCI can be specified for
large groups of individuals, any general expectations
must be individualized based on the unique char-
acteristics of the case. The panel has therefore
developed a table of expected functional outcomes
at several levels of complete SCI. The panel
emphasizes that the outcomes suggested in the
expected functional outcomes table (Table 6) must
be individualized to the unique characteristics,
circumstances, and capabilities of each person
with SCI. Therefore, prior to presenting a table of
expected functional outcomes, a recommendation
is made that describes the individualized process
of comprehensive assessment and goal setting.
5. Establish short- and long-term functional
goals with the participation of the person
served based upon a comprehensive, individu-
alized assessment by a team of health-care
professionals experienced in the care and
treatment of people with SCI. (Scientific evi-
dence—V; Grade of recommendation—C; Strength
of panel opinion—Strong)
Long-term goals, mutually established between
the individual with SCI and the treatment team,
describe an outcome the individual with SCI strives to
obtain. Long-term functional goals direct the patient’s
rehabilitation toward achieving expected functional
outcomes. Short-term goals are progressive steps that
must be met to achieve long-term goals.
A comprehensive assessment is essential to
determine the specific factors that may make it
necessary to adapt or modify an individual’s goal
of achieving those expected functional outcomes
identified in Table 6. The assessment must be
comprehensive, individualized, and performed by an
interdisciplinary team of health-care professionals
experienced in working with individuals with SCI.
No one member of the team has the depth of
knowledge or range of skills to independently
assess or treat an individual with SCI. The collective
wisdom of the interdisciplinary team will provide
the individual with SCI the best possible chance of
achieving expected functional outcomes.
Many factors can impede individual progress
toward the functional outcomes expected for a
particular level of injury. These contextual factors
include, but are not limited to, pre-existing medical
conditions, concomitant injuries, secondary com-
plications, injury-related and pre-existing cognitive
impairment, age, body type, psychological and
social factors, availability of financial resources,
and cultural factors. Some individuals may not
attain their expected functional outcomes because
they choose not to attempt certain tasks. Numerous
factors may be involved in an individual’s choosing
not to participate in learning a functional skill or
not to use that ability. Factors involved include
energy conservation, personal taste, fear, anxiety,
the availability of attendant care, and psychological
factors (Welch et al., 1986). Highly motivated
individuals may exceed expected functional out-
comes for their respective level of injury (Rintala
and Willems, 1987). Psychological, social, and
environmental support may be factors that facilitate
patients obtaining higher than expected levels of
functional outcome.
EXPECTED FUNCTIONAL OUTCOME TABLES
Outcome-based practice guidelines can provide
estimates of the effect of rehabilitation on functional
status or activity restrictions. In the accompanying
Table 6, the panel has put forth its best description,
based on outcome studies and expert clinical judg-
ment, of the expected outcomes of people with
motor complete SCI at 1 year after injury. These
outcome guidelines are presented with the full
recognition that outcomes are not fully under the
influence or control of health-care providers.
Differences in patient characteristics; the course
of medical events; psychological, social, and
environmental supports; and cognitive abilities
have strong influences on outcomes.
These outcome-based guidelines can be used to
establish goals, provide information for quality
improvement, and compare performance across
facilities with similar populations. When used
appropriately, outcome-based practice guidelines
provide a benchmark for comparing programs and
services while improving both the processes and
outcomes of care that have an enduring impact on
long-term functioning in the community. Disability
outcome measures are generally focused on the
degree to which a person can independently
complete an important function or activity of
daily living (ADL). This definition of disability is
consistent with the World Health Organization
(WHO) model of disablement in which disability is
measured at the level of the person interacting
with the environment during daily routines. In
the completion of daily tasks, adaptive equipment
becomes a crucial adjunct to the independence of
the person with SCI.
Table 6 presents expectations of functional
performance of SCI at 1 year postinjury and at
each of 8 levels of injury (C1-3, C4, C5, C6, C7-8,

T1-9, T10-L1 and L2-S5). The outcomes reflect a
level of independence that can be expected of a
person with motor complete SCI, given optimal
circumstances.
The categories presented reflect expected
functional outcomes in the areas of mobility, activities
of daily living, instrumental activities of daily living,
and communication skills. The guidelines are based
on consensus of clinical experts, available literature
on functional outcomes, and data compiled from
Uniform Data Systems (UDS) and the National
Spinal Cord Injury Statistical Center (NSCISC).
Within the functional outcomes for people
with SCI listed in Table 6, the panel has identified
a series of essential daily functions and activities,
expected levels of functioning, and the equipment
and attendant care likely to be needed to support
the predicted level of independence at 1 year
postinjury. These outcome areas include:
Respiratory, bowel, and bladder function.
The neurologic effects of spinal cord injury
may result in deficits in the ability of the
individual to perform basic bodily functions.
Respiratory function includes the ability to
breathe with or without mechanical assistance
and to adequately clear secretions. Bowel and
bladder function includes the ability to manage
elimination, maintain perineal hygiene, and
adjust clothing before and after elimination.
Adapted or facilitated methods of managing
these bodily functions may be required to
attain expected functional outcomes.
Bed mobility, bed/wheelchair transfers,
wheelchair propulsion, and positioning/
pressure relief. The neurologic effects of
spinal cord injury may result in deficits in the
ability of the individual to perform the
activities required for mobility, locomotion,
and safety. Adapted or facilitated methods of
managing these activities may be required to
attain expected functional outcomes.
Standing and ambulation. Spinal cord
injury may result in deficits in the ability to
stand for exercise or psychological benefit or
to ambulate for functional activities. Adapted
or facilitated methods of management may be
required to attain expected functional
outcomes in standing and ambulation.
Eating, grooming, dressing, and bathing.
The neurologic effects of spinal cord injury
may result in deficits in the ability of the
individual to perform these activities of daily
living. Adapted or facilitated methods of
managing these activities of daily living may
be required to attain expected functional
outcomes.
CLINICAL PRACTICE GUIDELINES 11
Communication (keyboard use,
handwriting, and telephone use). The
neurologic effects of spinal cord injury may
result in deficits in the ability of the individual
to communicate. Adapted or facilitated
methods of communication may be required
to attain expected functional outcomes.
Transportation (driving, attendant-
operated vehicle, and public
transportation). Transportation activities are
critical for individuals with SCI to become
maximally independent in their community.
Adaptations may be required to facilitate the
individual in meeting the expected functional
outcomes.
Homemaking (meal planning and
preparation and home management).
Adapted or facilitated methods of managing
homemaking skills may be required to attain
expected functional outcomes. Individuals
with complete SCI at any level will require
some level of assistance with some homemaking
activities. The hours of assistance with
homemaking activities are presented in Table 6.
Assistance required. Table 6 presents the
number of hours that may be required from a
caregiver to assist with personal care and
homemaking activities in the home. Personal
care includes hands-on delivery of all aspects of
self-care and mobility, as well as safety
interventions. Homemaking assistance is also
included in the recommendation for hours of
assistance and includes activities previously
presented. The number of hours presented in
both the panel recommendations and the self-
reported CHART data is representative of
skilled and unskilled and paid and unpaid hours
of assistance. The 24-hour-a-day requirement
noted for the C1–3 and C4 levels includes the
expected need for nonpaid attendant care to
provide for safety monitoring.
Adequate assistance is required to ensure
that the individual with SCI can achieve the
outcomes set forth in Table 6. The hours of
assistance recommended by the panel do not
reflect changes in assistance required over time
as reported by long-term survivors of SCI
(Gerhart et al., 1993), nor do they take into
account the wide range of individual variables
mentioned throughout this document that may
affect the number of hours of assistance
required. The Functional Independence
Measure (FIM) estimates are widely variable in
several of the categories. One does not know
whether the representative individuals with SCI
in the individual categories attained the
expected functional outcomes for their specific
level of injury nor whether there were
mitigating circumstances such as age, obesity,
12 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
or concomitant injuries, that would account for
variability in assistance reported. An
individualized assessment of needs is required
in all cases.
Equipment requirements. Minimum
recommendations for durable medical
equipment and adaptive devices are identified in
each of the functional categories. Most
commonly used equipment is listed, with the
understanding that variations exist among SCI
rehabilitation programs, and that use of such
equipment may be necessary to achieve the
identified functional outcomes. Additional
equipment and devices that are not critical for
the majority of individuals at a specific level of
injury may be required for some individuals.
The equipment descriptions are generic to
provide for variances in program philosophy
and financial resources. Rapid changes and
advances in equipment and technology will be
made and therefore must be considered.
Health-care professionals should keep in
mind that the recommendations set forth in
Table 6 are not intended to be prescriptive, but
rather to serve as a guideline. The importance
of individual functional assessment of people
with SCI prior to making equipment
recommendations cannot be over emphasized.
All durable medical equipment and adaptive
devices must be thoroughly assessed and tested
to determine medical necessity, to prevent
medical complications (e.g., postural deviations,
skin breakdown, or pain), and to foster optimal
functional performance. Environmental control
units and telephone modifications may be
needed for safety and maximal independence,
and each person must be individually evaluated
for the need for this equipment. Disposable
medical product recommendations are not
included in this document.
FIM. Evidence for the specific levels of
independence provided in Table 6 relies both
on expert consensus and data from FIM in
large-scale, prospective, and longitudinal
research conducted by NSCISC. FIM is the
most widely used disability measure in
rehabilitation medicine, and although it may not
incorporate all of the characteristics of
disability in individuals recovering from SCI, it
captures many basic disability areas.
FIM consists of 13 motor and 5 cognitive
items that are individually scored from 1 to 7.
A score of 1 indicates complete dependence
and a score of 7 indicates complete
independence (see Table 5). The sum of the 13
FIM motor score items can range from 13,
indicating complete dependence for all items, to
91, indicating complete independence for all
items. FIM is a measure usually completed by
health-care professionals; different observers,
including the patient, family members, and
caregivers, can contribute information to the
ratings. Each of these reporters may represent
a different type of potential bias.
It should also be noted that although the
sample sizes of FIM data for certain neurologic
level groups are quite small, the consistency of
the data adds confidence to the interpretation.
Other pertinent data regarding functional
independence must be factored into outcome
analyses, including medical information, patient
factors, social role participation, quality of life,
and environmental factors and supports.
In Table 6, FIM data, when available, are
reported in three areas. First, the expected FIM
outcomes are documented based on expert
clinical consensus. The second number reported
is the median FIM score, as compiled by NSCISC.
The interquartile range for NSCISC FIM data is
the third set of numbers. In total, the FIM data
represent 1-year postinjury FIM assessments of
405 survivors with complete SCI and a median
age of 27 years. The NSCISC sample size for
FIM and Assistance Data is provided for each
level of injury. Different outcome expectations
should clearly apply to different patient
subgroups and populations. Some populations
are likely to be significantly older than the
referenced one. Functional abilities may be
limited by advancing age (Penrod et al., 1990;
Yarkony et al., 1988a).
Home modifications. To provide the best
opportunity for individuals with SCI to achieve
the identified functional outcomes, a safe and
architecturally accessible environment is
necessary. An accessible environment must
take into consideration, but not be limited to,
entrance and egress, mobility in the home,
and adequate setup to perform personal care
and homemaking tasks.
TA B L E 5 FIM LEVELS
7) Complete independence (timely, safely) No
6) Modified independence (device) Helper
Modified Dependence
5) Supervision
4) Minimal assist (Subject = 75% or more)
3) Moderate assist (Subject = 50%–74%) Helper
Complete Dependence
2) Maximal assist (Subject = 25%–49%)
1) Total assist (Subject = 0%–24%)
Source: Guide for the Uniform Data Set for Medical Rehabilitation
(including the FIMSM instrument), Version 5.0. Buffalo, NY 14214:
State University of New York at Buffalo, 1996.
TABLE 6. Expected Functional Outcomes Level C1-3
Functionally relevant muscles innervated: Sternocleidomastoid; cervical paraspinal; neck accessories
Movement possible: Neck flexion, extension, rotation
Patterns of weakness: Total paralysis of trunk, upper extremities, lower extremities; dependent on ventilator

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=15 / Assist=12

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR

Respiratory • Ventilator dependent • 2 ventilators (bedside, portable)

• Inability to clear secretions • Suction equipment or other suction
management device
• Generator/battery backup

Bowel Total assist Padded reclining shower/commode 1 1 1

chair (if roll-in shower available)

Bladder Total assist 1 1 1

Bed Mobility Total assist Full electric hospital bed with

Trendelenburg feature and side rails

Bed/Wheelchair Total assist • Transfer board 1 1 1

Transfers • Power or mechanical lift with sling

Pressure Relief/ Total assist; may be • Power recline and/or tilt wheelchair
Positioning independent with equipment • Wheelchair pressure-relief cushion
• Postural support and head
control devices as indicated
• Hand splints may be indicated
• Specialty bed or pressure-relief
mattress may be indicated

Eating Total assist 1 1 1

Dressing Total assist 1 1 1

Grooming Total assist 1 1 1

Bathing Total assist • Handheld shower 1 1 1

• Shampoo tray
• Padded reclining shower/commode
chair (if roll-in shower available)

Wheelchair Manual: Total assist • Power recline and/or tilt wheelchair 6 1 1–6
Propulsion Power: Independent with head, chin, or breath control
with equipment and manual recliner
• Vent tray

Standing/ Standing: Total assist;

Ambulation Ambulation: Not indicated

Communication Total assist to independent, • Mouth stick, hightech computer

depending on work station access, environmental control unit
setup and equipment • Adaptive devices everywhere
availability as indicated

Transportation Total assist Attendant–operated van

(e.g., lift, tie-downs) or accessible
public transportation

Homemaking Total assist

Assist Required • 24–hour attendent care 24* 24* 12–24*

to include homemaking
• Able to instruct in all
aspects of care
*Hours per day
TABLE 6. Expected Functional Outcomes Level C4
Functionally relevant muscles innervated: Upper trapezius; diaphragm; cervical paraspinal muscles
Movement possible: Neck flexion, extension, rotation; scapular elevation; inspiration
Patterns of weakness: Paralysis of trunk, upper extremities, lower extremities; inability to cough,
endurance and respiratory reserve low secondary to paralysis of intercostals

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=28 / Assist=12

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR

Respiratory May be able to breathe If not ventilator free, see C1–3

without a ventilator for equipment requirements

Bowel Total assist Reclining shower/commode 1 1 1

chair (if roll-in shower available)

Bladder Total assist 1 1 1

Bed Mobility Total assist Full electric hospital bed with

Trendelenburg feature and side rails

Bed/Wheelchair Total assist • Transfer board 1 1 1

Transfers • Power or mechanical lift with sling

Pressure Relief/ Total assist; may be • Power recline and/or tilt wheelchair
Positioning independent with equipment • Wheelchair pressure-relief cushion
• Postural support and head
control devices as indicated
• Hand splints may be indicated
• Specialty bed or pressure-relief
mattress may be indicated

Eating Total assist 1 1 1

Dressing Total assist 1 1 1

Grooming Total assist 1 1 1

Bathing Total assist • Shampoo tray 1 1 1

• Handheld shower
• Padded reclining shower/commode
chair (if roll-in shower available)

Wheelchair Power: Independent • Power recline and/or tilt wheelchair 6 1 1–6

Propulsion Manual: Total assist with head, chin, or breath control
and manual recliner
• Vent tray

Standing/ Standing: Total assist • Tilt table

Ambulation Ambulation: Not usually indicated • Hydraulic standing table

Communication Total assist to independent, Mouth stick, hightech computer access,

depending on work station environmental control unit
setup and equipment availability

Transportation Total assist Attendant–operated van

(e.g., lift, tie-downs) or accessible
public transportation

Homemaking Total assist

Assist Required • 24–hour care to include

homemaking 24* 24* 16–24*
• Able to instruct in all
aspects of care

*Hours per day.

TABLE 6. Expected Functional Outcomes Level C5
Functionally relevant muscles innervated: Deltoid, biceps, brachialis, brachioradialis, rhomboids, serratus anterior
(partially innervated)
Movement possible: Shoulder flexion, abduction, and extension; elbow flexion and supination; scapular adduction and abduction
Patterns of weakness: Absence of elbow extension, pronation, all wrist and hand movement
Total paralysis of trunk and lower extremities

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=41 / Assist=35

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR

Respiratory Low endurance and vital capacity

secondary to paralysis of
intercostals; may require assist
to clear secretions
Bowel Total assist Padded shower/commode chair or 1 1 1
padded transfer tub bench with
commode cutout
Bladder Total assist Adaptive devices may be indicated 1 1 1
(electric leg bag emptier)
Bed Mobility Some assist • Full electric hospital bed with
Trendelenburg feature with
patients control
• Side rails
Bed/Wheelchair Total assist • Transfer board 1 1 1
Transfers • Power or mechanical lift
Pressure Relief/ Independent with equipment • Power recline and/or tilt wheelchair
Positioning • Wheelchair pressure-relief cushion
• Hand splints
• Specialty bed or pressure-relief
mattress may be indicated
• Postural support devices
Eating Total assist for setup, then • Long opponens splint 5 5 2.5–5.5
independent eating with • Adaptive devices as indicated
equipment
Dressing Lower extremity: Total assist • Long opponens splint 1 1 1–4
Upper extremity: Some assist • Adaptive devices as indicated
Grooming Some to total assist • Long opponens splints 1–3 1 1–5
• Adaptive devices as indicated
Bathing Total assist • Padded tub transfer bench or 1 1 1–3
shower/commode chair
• Handheld shower
Wheelchair Power: Independent Power: Power recline and/or tilt with 6 6 5–6
Propulsion Manual: Independent to some arm drive control
assist indoors on noncarpet, Manual: Lightweight rigid or folding
level surface; some to total frame with handrim modifications
assist outdoors
Standing/ Total assist Hydraulic standing frame
Ambulation
Communication Independent to some assist • Long opponens splint
after setup with equipment • Adaptive devices as needed for page
turning, writing, button pushing
Transportation Independent with highly Highly specialized modified
specialized equipment; some van with lift
assist with accessible public
transportation; total assist for
attendant-operated vehicle
Homemaking Total assist
Assist Required • Personal care: 10 hours/day
• Homecare: 6 hours/day 16* 23* 10–24*
• Able to instruct in all
aspects of care
*Hours per day.
TABLE 6. Expected Functional Outcomes
Functionally relevant muscles innervated: Clavicular pectoralis supinator; extensor carpi radialis longus
and brevis; serratus anterior; latissimus dorsi
Movement possible: Scapular protractor; some horizontal adduction, forearm supination, radial wrist extension
Patterns of weakness: Absence of wrist flexion, elbow extension, hand movement; total paralysis of trunk and lower extremities
FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=43 / Assist=35
Expected Functional Outcomes
Respiratory Low endurance and vital capacity
secondary to paralysis of
intercostals; may require
assist to clear secretions
Bowel Some to total assist
Bladder Some to total assist with
equipment; may be independent
with leg bag emptying
Bed Mobility Some assist
Bed/Wheelchair Level: Some assist to independent
Transfers Uneven: Some to total assist
Pressure Relief/ Independent with equipment
Positioning and/or adapted techniques
Eating Independent with or without
equipment; except cutting,
which is total assist
Dressing Independent upper extremity;
some assist to total assist for
lower extremities
Grooming Some assist to independent
with equipment
Bathing Upper body: Independent
Lower body: Some to total assist
Wheelchair Power: Independent with
Propulsion standard arm drive on all surfaces
Manual: Independent indoors;
some to total assist outdoors
Standing/ Standing: Total assist
Ambulation Ambulation: Not indicated
Communication Independent with or without
equipment
Transportation Independent driving from
wheelchair
Homemaking Some assist with light meal
preparation; total assist for
all other homemaking
Assist Required • Personal care: 6 hours/day
• Homecare: 4 hours/day
Level C6
Equipment FIM/Assistance Data
Exp Med IR
• Padded tub bench with commode 1–2 1 1
cutout or padded shower/commode
chair
• Other adaptive devices as indicated
Adaptive devices as indicated 1–2 1 1
• Full electric hospital bed
• Side rails
• Full to king standard bed
may be indicated
• Transfer board 3 1 1–3
• Mechanical lift
• Power recline wheelchair
• Wheelchair pressure relief cushion
• Postural support devices
• Pressure-relief mattress or overlay
may be indicated
Adaptive devices as indicated 5–6 5 4–6
(e.g., u-cuff, tendenosis splint,
adapted utensils, plate guard)
Adaptive devices as indicated 1–3 2 1–5
(e.g., button; hook; loops on zippers,
pants; socks, velcro on shoes)
Adaptive devices as indicated 3–6 4 2–6
(e.g., U-cuff, adapted handles)
• Padded tub transfer bench 1–3 1 1–3
or shower/commode chair
• Adaptive devices as needed
• Handheld shower
Manual: Lightweight rigid or folding 6 6 4–6
frame with modified rims
Power: May require power recline or
standard upright power wheelchair
Hydraulic standing frame
Adaptive devices as indicated
(e.g., tendenosis splint; writing splint
for keyboard use, button pushing,
page turning, object manipulation)
• Modified van with lift
• Sensitized hand controls
• Tie–downs
Adaptive devices as indicated
10* 17* 8–24*
*Hours per day.
TABLE 6. Expected Functional Outcomes Level C7-8
Functionally relevant muscles innervated: Latissimus dorsi; sternal pectoralis; triceps; pronator quadratus; extensor
carpi ulnaris; flexor carpi radialis; flexor digitorum profundus and superficialis; extensor communis; pronator/flexor/extensor/
abductor pollicis; lumbricals [partially innervated]
Movement possible: Elbow extension; ulnar/wrist extension; wrist flexion; finger flexions and extensions; thumb
flexion/extension/abduction
Patterns of weakness: Paralysis of trunk and lower extremities; limited grasp release and dexterity secondary
to partial intrinsic muscles of the hand

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=43 / Assist=35

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR
Respiratory Low endurance and vital capacity
secondary to paralysis of
intercostals; may require assist
to clear secretions.

Bowel Some to total assist • Padded tub bench with commode 1–4 1 1–4
cutout or shower commode chair
• Adaptive devices as needed

Bladder Independent to some assist Adaptive devices as indicated 2–6 3 1–6

Bed Mobility Independent to some assist Full electric hospital bed or

full to king standard bed

Bed/Wheelchair Level: Independent. With or without transfer board 3–7 4 2–6

Transfers Uneven: Independent to
some assist

Pressure Relief/ Independent • Wheelchair pressure relief cushion

Positioning • Postural support devices as indicated
• Pressure-relief mattress/or overlay
may be indicated

Eating Independent Adaptive devices as indicated 6–7 6 5–7

Dressing Independent upper extremities; Adaptive devices as indicated 4–7 6 4–7

independent to some assist
lower extremities

Grooming Independent Adaptive devices as indicated 6–7 6 4–7

Bathing Upper body: Independent; • Padded transfer tub bench 3–6 4 2–6
Lower extremity: Some assist to or shower/commode chair
independent • Handheld shower
• Adaptive devices as needed

Wheelchair Manual: Independent all indoor Manual: Rigid or folding lightweight 6 6 6

Propulsion surfaces and level outdoor terrain; or folding wheelchair with modified rims
some assist with uneven terrain

Standing/ Standing: Independent to some assist Hydraulic or standard standing frame

Ambulation Ambulation: Not indicated

Communication Independent Adaptive devices as indicated

Transportation Independent car if independent • Modified vehicle

with transfer and wheelchair • Transfer board
loading/unloading; independent
driving modified van from
captain’s seat

Homemaking Independent light meal Adaptive devices as indicated

preparation and homemaking;
some to total assist for complex
meal prep and heavy housecleaning

Assist Required • Personal care: 6 hours/day 8* 12* 2–24*

• Homecare: 2 hours/day
*Hours per day.
TABLE 6. Expected Functional Outcomes Level T1–9
Functionally relevant muscles innervated: Intrinsics of the hand including thumbs; internal and external
intercostals; erector spinae; lumbricals; flexor/extensor/abductor pollicis
Movement possible: Upper extremities fully intact; limited upper trunk stability. Endurance increased secondary
innervation of intercostals
Patterns of weakness: Lower trunk paralysis. Total paralysis lower extremities

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=144 / Assist=122

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR
Respiratory Compromised vital capacity
and endurance

Bowel Independent Elevated padded toilet seat or padded 6–7 6 4–6

tub bench with commode cutout

Bladder Independent 6 6 5–6

Bed Mobility Independent Full to king standard bed

Bed/Wheelchair Independent May or may not require transfer board 6–7 6 6–7
Transfers

Pressure Relief/ Independent • Wheelchair pressure relief cushion

Positioning • Postural support devices as indicated
• Pressure-relief mattress or
overlay may be indicated

Eating Independent 7 7 7

Dressing Independent 7 7 7

Grooming Independent 7 7 7

Bathing Independent • Padded tub transfer bench or 6–7 6 5–7

shower/commode chair
• Handheld shower

Wheelchair Independent Manual rigid or folding 6 6 6

Propulsion lightweight wheelchair

Standing/ Standing: Independent Standing frame

Ambulation Ambulation: Typically not
functional

Communication Independent

Transportation Independent in car, including Hand controls

loading and unloading
wheelchair

Homemaking Independent with complex meal

prep and light housecleaning;
total to some assist with heavy
housekeeping

Assist Required Homemaking: 3 hours/day 2* 3* 0–15*

*Hours per day.
TABLE 6. Expected Functional Outcomes Level T10–L1
Functionally relevant muscles innervated: Fully intact intercostals; external obliques; rectus abdominis
Movement possible: Good trunk stability
Patterns of weakness: Paralysis of lower extremities

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=71 / Assist=57

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR

Respiratory Intact respiratory function

Bowel Independent Padded standard or raised 6–7 6 6

padded toilet seat

Bladder Independent 6 6 6

Bed Mobility Independent Full to king standard bed

Bed/Wheelchair Independent 7 7 6–7

Transfers

Pressure Relief/ Independent • Wheelchair pressure-relief cushion

Positioning • Postural support devices as indicated
• Pressure-relief mattress or overlay
may be indicated

Eating Independent 7 7 7

Dressing Independent 7 7 7

Grooming Independent 7 7 7

Bathing Independent • Padded transfer tub bench 6–7 6 6–7

• Handheld shower

Wheelchair Independent all indoor and Manual rigid or folding 6 6 6

Propulsion outdoor surfaces lightweight wheelchair

Standing/ Standing: Independent • Standing frame

Ambulation Ambulation: Functional, some • Forearm crutches or walker
assist to independent • Knee, ankle, foot orthesis (KAFO)

Communication Independent

Transportation Independent in car, including Hand controls

loading and unloading wheelchair

Homemaking Independent with complex meal

prep and light housecleaning;
some assist with heavy housekeeping

Assist Required Homemaking: 2 hours/day 2* 2* 0–8*

*Hours per day.

TABLE 6. Expected Functional Outcomes Level L2–S5
Functionally relevant muscles innervated: Fully intact abdominals and all other trunk muscles; depending
on level, some degree of hip flexors, extensors, abductors, adductors; knee flexors, extensors; ankle dorsi,
flexors, plantar flexors.
Movement possible: Good trunk stability. Partial to full control lower extremities.
Patterns of weakness: Partial paralysis lower extremities, hips, knees, ankle, foot

FIM/Assistance Data: Exp = Expected FIM Score / Med = NSCISC Median / IR = NSCISC Interquartile Range
NSCISC Sample Size: FIM=20 / Assist=16

Expected Functional Outcomes Equipment FIM/Assistance Data

Exp Med IR
Respiratory Intact function

Bowel Independent Padded toilet seat 6–7 6 6–7

Bladder Independent 6 6 6–7

Bed Mobility Independent

Bed/Wheelchair Independent Full to king standard bed 7 7 7

Transfers

Pressure Relief/ Independent • Wheelchair pressure-relief cushion

Positioning • Postural support device as indicated

Eating Independent 7 7 7

Dressing Independent 7 7 7

Grooming Independent 7 7 7

Bathing Independent • Padded tub bench 7 7 6–7

• Handheld shower

Wheelchair Independent on all indoor Manual rigid or folding 6 6 6

Propulsion and outdoor surfaces lightweight wheelchair

Standing/ Standing: Independent • Standing frame

Ambulation Ambulation: Functional, • Knee-ankle-foot orthosis or
independent to some assist ankle-foot orthosis
• Forearm crutches or cane as indicated

Communication Independent

Transportation Independent in car, including Hand controls

loading and unloading wheelchair

Homemaking Independent complex cooking

and light housekeeping; some
assist with heavy housekeeping

Assist Required Homemaking: 0–1 hour/day 0–1* 0* 0–2*

*Hours per day.

6. Monitor functional ability throughout the
rehabilitation process, modifying treatment
strategies to maximize functional outcome.
(Scientific evidence—None; Grade of
recommendation—Expert consensus; Strength of
panel opinion—Strong)
Throughout the rehabilitation process there is
ongoing assessment to gather functional, clinical,
and psychological/social data that will assist
health-care professionals in determining the effec-
tiveness of treatment interventions and strategies
and identifying whether treatment approaches,
techniques, and outcome expectations should be
modified. A standard instrument to measure
attainment of functional goals can assist the team
in objectively measuring functional outcomes.
7. After achievement of functional goals, conduct
periodic evaluations of functional status
throughout the individual’s lifetime. (Scientific
evidence—III/V; Grade of recommendation—C;
Strength of panel opinion—Strong)
Individuals with SCI may experience changes
in functional abilities over time for a variety of
reasons. These reasons may include changes in
neurologic status, psychological/social status,
environment, personal choice, health and wellness,
and equipment modifications. The potential
impact of these changes on health and functional
status will best be addressed by periodic assessment
to either optimize potential functional gains or
alleviate potential functional losses.
Medical and physical complications may lead
to temporary immobility or hospitalization and may
impair adjustment to spinal cord injury (DeVivo et
al., 1992). Individuals with spinal cord injuries are
at risk for numerous medical complications that
may limit functional abilities (Levi et al., 1995).
Pain after spinal cord injury may be described
as neurogenic (dysesthetic) or non-neurogenic from
musculoskeletal or other causes (Davidoff et al.,
1987; Levi et al., 1995). Neurogenic pain may
impair participation in therapy and functional
activities. Musculoskeletal complications such as
tendonitis, nerve entrapments, sprains, and
strains cause pain and limit performance (Bayley
et al., 1987). Spasticity is a particularly common
problem that may limit functional outcome
(Parke et al., 1989).
Functional abilities may be limited by advancing
age (Penrod et al., 1990; Yarkony et al., 1988a).
More complex skills, such as dressing, transfers,
and ambulation may be limited as age increases,
particularly in those individuals above age 50.
Physical assistance and attendant-care needs
increase with age (Gerhart et al., 1993; Whiteneck
et al., 1992a). Transfers, mobility, dressing, and
toileting are more commonly affected. Older
CLINICAL PRACTICE GUIDELINES 21
individuals at time of injury will need more attendant
care sooner after injury. Younger individuals at
time of injury will require more attendant care as
they age. Factors that have an impact on the
decreasing abilities and increased attendant-care
needs include musculoskeletal problems and
medical complications such as pressure ulcers.
Psychological adjustment is affected by aging and
this will affect functional abilities (Krause and
Crewe, 1991). With increasing age, people with
SCI tend to become less active.
8. Document deviations in the achievement of
functional outcomes (with reference to the
normative data in Table 6) by groups of
individuals receiving rehabilitation. Address
such deviations in terms of improvement of
clinical processes of care or unique population
characteristics requiring risk adjustment.
(Scientific evidence—Unpublished data from the
NSCISC system; Grade of recommendation—Expert
consensus; Strength of panel opinion—Strong)
When selecting published normative data for
comparison with a rehabilitation program’s group
outcomes, careful attention should be given to the
reliability, validity, and sample size of the published
outcome results from reputable sources. The same
careful attention also should be given to the degree
of similarity between the sample from which these
normative data have been derived and the charac-
teristics of the population served by the specific
rehabilitation program. Risk factors that are likely
to result in better or worse outcomes for the popu-
lation served by individual rehabilitation programs
should be carefully noted and addressed.
Outcomes can be affected by levels of severity
and complexity of disorders or illnesses, various
forms of clinical conditions and comorbidities,
sociocultural and sociodemographic differences,
resources available, and personal goals and pref-
erences of the people served. Different outcome
expectations should clearly apply to different patient
subgroups and populations. If rigid conformance
to published normative data is expected without
attention to these risk factors and the process of
severity adjustment, certain populations at risk for
poor outcomes may be underserved by the health-
care/rehabilitation system with undue attention given
only to populations that can easily meet these
published outcome goals (Palmer, 1997; Schneider
and Epstein, 1996).
An example of severity-adjusted functional out-
comes, taking into account level and completeness
of SCI, is illustrated here using Model SCI Systems
data. Figures 2 through 4 illustrate the median and
the 25th and 75th percentile discharge FIM motor
scores for patients who were treated at Model SCI
Systems facilities during a 2-year period ending in
22 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

1998, distinguished by neurologic injury levels and Discharge FIM motor scores are strongly relat-
ASIA impairment levels. The sum of the 13 FIM ed to neurologic level for people with complete
motor items can range from 13, indicating complete (ASIA A) and sensory incomplete lesions (ASIA B)
dependence on all items, to 91, indicating complete as well as motor incomplete lesions (ASIA C); mean
independence on all items. scores increase as neurologic injury level decreases
from cervical to thoracic to lumbar regions. In
contrast, people with motor incomplete impairment
FIGURE 2
Raw FIM Motor Scores for ASIA A and B
levels and muscle grades greater than or equal to 3
100 (ASIA D) were discharged with relatively high and
90 84 consistent discharge FIM motor scores regardless
80 80 of neurologic level.
70 76 In brief, Figures 2 through 4 illustrate the sepa-
60 rate effects of SCI level (greater function is associated
50 50 with more caudal lesions) and completeness (greater
40
function is associated with more incomplete lesions).
The variable sizes of the interquartile ranges
30 27
18 reflect the varying sample size of each group and
20 23
13 the variability of outcomes within each group.
10
Rehabilitation programs can use this information to
0 document deviations in the functional outcomes of
C1-3 C4 C5 C6 C7-8 T1-T9 T10-L1 L2-S5
Injury Level groups served and take appropriate action to
enhance their outcomes, as needed.

FIGURE 3 9. After the initial acute care and rehabilitation

Raw FIM Motor Scores for ASIA C phase, discharge the individual with SCI back
100
into the community. (Scientific evidence—III/V;
90 83 Grade of recommendation—C; Strength of panel
80 82 opinion—Strong)
76
70 “Community” is defined as private residences
66
60 and group living facilities other than nursing homes
50 that are commensurate with the individual’s function-
40 al level of independence, personal preference, and
33
30 social support. The vast majority of individuals with
24 SCI are discharged to private residences within the
20 13 20
10
community (96 percent of those treated at Model
SCI Systems and 90 percent of individuals with
0
C1-3 C4 C5 C6 C7-8 T1-T9 T10-L1 L2-S5 SCI treated at Uniform Data System subscribing facil-
Injury Level ities) (DeVivo, 1999; Fiedler and Granger, 1998).
Based on national data, factors that increase the
likelihood of nursing home discharge include higher
neurological level, dependence in activities of daily
FIGURE 4 living, inability to ambulate, being unmarried or
Raw FIM Motor Scores for ASIA D
100 living alone, Medicare or Medicaid funding, and
88
90 residing outside the southeastern United States
89 87
80 82 85 83
85 (DeVivo, 1999). Moreover, 94 percent to 97 per-
70 cent of individuals with SCI who are less than 60
60
years of age continue to reside within the communi-
ty on a long-term basis, while 84 percent of individ-
50
47 uals between 61 and 75 years of age and 72
40
percent of individuals at least 76 years of age cur-
30
rently reside within the community (DeVivo et al.,
20
1992). Institutional placement should only be con-
10 sidered when supportive resources for community
0 discharge are not available.
C1-3 C4 C5 C6 C7-8 T1-T9 T10-L1 L2-S5
Injury Level
 CLINICAL PRACTICE GUIDELINES 23

Expected Social Integration Outcomes
The purpose of the health-care system must
be to “continuously reduce the impact and burden
of illness, injury, and disability and to improve the
health and functioning of the people” (President’s
Advisory Commission on Consumer Protection
and Quality in Health Care, 1998). For a long
time, rehabilitation seemed to focus primarily on
stabilization of impairments and reduction in care-
giver needs by focusing on activity limitations, but
increasingly rehabilitation is referred to as “the
quality-of-life profession.” The World Health
Organization has recognized, since 1980, the
importance of a broad-based conceptualization of
outcomes, including impairments, activities, and
societal participation, while the recent revision of
this classification system notes the importance of
linking these outcome domains with quality-of-life
concepts and the measurement of subjective
well-being (WHO, 1997).
10. Rehabilitation should focus on providing
opportunities for societal participation in 110
meaningful roles. (Scientific evidence—meta- 100
analyses and unpublished data from NSCISC; 90
Grade of recommendation—Expert consensus;
Strength of panel opinion—Strong) 80
The use of a broad-based approach to outcomes 70
is particularly important since there are mild to 60
weak relationships between domains (impairment, 50
activities, participation, and quality of life), indicat- 40
ing lack of a causal chain between these outcome 30
domains (Dijkers, 1997). This is particularly the
20
case since findings from one domain alone often 10
do not predict important variables, such as health- 0
care use, work performance, or social integration
(WHO, 1997). Many people with spinal cord injury
will be able to participate in meaningful social roles
beyond those expected by level of injury.
impairment groups of individuals with spinal cord
injury [high tetraplegia with ASIA A, B, or C; low
tetraplegia with ASIA A, B, or C; paraplegia with
ASIA A, B, or C; and motor functional incomplete
injuries at any level (ASIA D)].
For these reasons, Figures 5 through 8 are
reproduced, displaying median and interquartile
range information for CHART scores in these four
diagnostic groups using Model SCI Systems data
from NSCISC. Percentile scores on CHART range
from zero, indicating lowest levels of societal par-
ticipation, to 100, indicating a full level of partici-
pation. Five scales are measured that distinguish
physical, mobility, occupational, social, and eco-
nomic aspects of participation in societal roles.
Rehabilitation programs can use this information
to document deviations in societal participation of
groups served and take appropriate action to
enhance their outcomes, as needed.
FIGURE 5
CHART Component Scores for High Tetraplegia
(C1-4) ASIA A, B, and C
89
75
56
37
23
Physical Mobility Occupation Social Economic
CHART Component

11. Rehabilitation programs should document FIGURE 6

deviation in social participation and integration CHART Component Scores for Low Tetraplegia
(with reference to the normative data in (C5-8) ASIA A, B, and C
110
Figures 5-8) by groups who have completed
100
rehabilitation. Address such deviations in 95
90
terms of improvement of clinical processes 84
80 84
of care or unique population characteristics
requiring risk adjustment. 70
(Scientific evidence—meta-analyses and unpublished 60
data from NSCISC; Grade of recommendation—Expert 50 50 50
consensus; Strength of panel opinion—Strong) 40
Several measures of community integration 30
and societal participation exist. One such measure, 20
the Craig Handicap Assessment and Reporting 10
Technique (CHART) (Whiteneck et al., 1992b), 0
Physical Mobility Occupation Social Economic
evaluates the participation emphasized by the WHO
CHART Component
(1997), has psychometric validity and reliability,
and has well established normative data for four
24 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

FIGURE 7 phenomenological, quality-of-life measures completed

CHART Component Scores for Paraplegia
(ASIA A, B, and C)
by individuals with spinal cord injury.
110 Composites of surrogate measures are likely
100 100
to confound and cloud the direct assessment of
100 99
90 quality of life (Campbell, 1976). This is particularly
80 true since quality-of-life definitions may differ
75 dramatically from person to person (Warren et al.,
70
66 1996). A professional who looks only at component
60
measures is likely to misinterpret the needs of a
50
person with a spinal cord injury (Laman and
40
Lankhorst, 1994; Stensman, 1985). Health-care
30
professionals significantly underestimate the quality
20 of life of individuals with spinal cord injury (Bach
10 and Tilton, 1994; Gerhart et al., 1994; Gerhart
0 and Corbett, 1995). Most research regarding
Physical Mobility Occupation Social Economic
quality of life and spinal cord injury has used
CHART Component
multi-item scales for optimal reliability (Evans et
FIGURE 8 al., 1994).
CHART Component Scores for ASIA D
110 13. Facilitate opportunities for optimal quality of
100 100
life within the full continuum of health-care
100 100 100
90 and rehabilitation programs. (Scientific
evidence—III/V and meta-analyses; Grade of
80
recommendation—C; Strength of panel
70 66 opinion—Strong)
60 Although data indicate that people with spinal
50 cord injury, on average, report a lower level of
40 quality of life than the average person without an
30 injury (Dijkers, 1997), a spinal cord injury does
20 not necessarily diminish quality of life (Brown et
10 al., 1987). Goal-setting and treatment planning
0 should focus on achieving the highest level of
Physical Mobility Occupation Social Economic
quality of life possible considering appropriate
CHART Component normative data, the person’s choices, comorbidities,
Expected Quality-of-Life Outcomes age, culture, and premorbid functioning (Gerhart
Quality of life is a personal, global evaluation et al., 1993, Whiteneck et al., 1992a).
of well-being or general satisfaction with life expe- Analysis of the factors that are likely to influence
rienced by people under their current life condi- quality of life may help to focus interventions that
tions (Lehman, 1983; McDaniel and Bach, 1994). could maximize quality of life outcomes. The
Health-related quality of life is related to perceived relationship between quality of life and social role
health, physical impairments, or disease/disorder. barriers is stronger (r = -0.32) than the association
Health-related quality of life is only 1 of at least 11 between quality of life and activity limitations
components that are contributory to overall quality (r = -0.21). The relationship between quality of
of life (Hammell, 1995). life and impairment is not statistically significant
(Dijkers, 1997). Prior findings have emphasized
12. Assess quality of life for individuals with associations with the components of social support,
spinal cord injury using direct perceptions of social integration, mobility, occupation, and family
the individual involved. (Scientific evidence— roles (Dijkers, 1997). Other research has empha-
III/V and meta-analyses; Grade of recommendation— sized the potential contributions of psychological
C; Strength of panel opinion—Strong) coping, achievement, health, age, activity, affect,
Assessments of quality of life may not necessarily attitude, pain, beliefs, and behavior as important
reflect changes from pre-injury reference points or components contributing to quality of life (Anke et
contexts since, by definition, quality of life is al., 1995; Noreau and Shephard, 1995; Robnett
“experienced by people under their current life and Gliner, 1995; Warren et al., 1996).
conditions.” Quality of life from the perspective of Improvements in subjective well-being may
observers without spinal cord injury (surrogate result in reduced secondary complications, activity
measures) are best addressed by other assessments limitations, and social role barriers due to increased
that can subsequently be correlated with direct, engagement in self-care and health-maintenance
 CLINICAL PRACTICE GUIDELINES 25

activities (Tate et al., 1994). Likewise, if barriers grades of D regardless of injury level). NSCISC
to performance of social roles are decreased, patients are asked to complete the instrument 1
impairments related to secondary complications year after spinal cord injury, on average. Rehabil-
might be prevented or diminished (Anson et al., itation programs can use this information to docu-
1993; Bach and Tilton, 1994; Stover et al., 1995). ment deviations in the life satisfaction of groups
An instrument that can be used to describe served and take appropriate action to enhance
subjective well-being is Diener’s Satisfaction with their outcomes, as needed.
Life Scale (Diener et al., 1985). The Diener scale
is a 5-item scale with each item rated on a scale
FIGURE 9
that ranges from 1 to 7 with a total score that Diener Scores Across Impairment Groups
ranges from 5 to 35, with higher scores implying 30
greater satisfaction with life. Normative data from 25
the Model SCI Systems (NSCISC) provide rehabili- 21.1
20 20.1
tation programs an opportunity to adjust life satis- 19.1
15 17.6
faction by severity of spinal cord injury. 10
Figure 9 illustrates median and 25th and 75th
5
percentiles on Diener’s Satisfaction with Life Scale
0
for NSCISC patients distinguished by neurologic Hi Tetra Low Tetra Para ASIA D
level and completeness of injury (high tetraplegia Impairment Group
[ASIA A, B, C], low tetraplegia [ASIA A, B, C],
paraplegia [ASIA A, B, C], and ASIA impairment
26 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
Recommendations for
Future Research
The approach taken by the panel for these
clinical practice guidelines on outcomes following
traumatic spinal cord injury was to use large-scale,
prospective, descriptive research to document
achievable outcomes in four domains—motor
recovery, functional independence, social integra-
tion, and quality of life. Two lines of research are
recommended to improve this document and max-
imize positive outcomes in the future.
First, treatment effectiveness research is need-
ed to better understand which program strategies
efficiently produce the best outcomes. Second,
research quantifying the expected impact of
personal injury and environmental characteristics
on the outcomes achieved is needed for greater
accuracy in predicting outcomes and severity and
for adjusting comparisons among programs.

References
Adler, C. Spinal cord injury. In Occupational Therapy
Practice Skills for Physical Dysfunction, edited by L.
Williams Pedretti, 765–84. St. Louis, MO: C.B. Mosby, 1996.
American Spinal Injury Association. International Standards
for Neurological and Functional Classification of Spinal
Cord Injury. Rev. ed. Chicago: American Spinal Injury
Association, 1996.
Anke, A.G., A.E. Stenehjem, and J.K. Stanghelle. Pain and life
quality within 2 years of spinal cord injury. Paraplegia 33
(1995): 555–9
Anson, C.A., D.J. Stanwyck, and J.S. Krause. Social support
and health status in spinal cord injury. Paraplegia 31 (1993):
632–8.
Azouvi, P., M. Mane, J. Thiebaut, et al. Intrathecal baclofen
administration for control of severe spinal spasticity:
Functional improvement and long-term followup. Arch Phys
Med Rehabil 77 (1996): 35–9.
Bach, J.R., and M.C. Tilton. Life satisfaction and well-being
measures in ventilator-assisted individuals with traumatic
tetraplegia. Arch Phys Med Rehabil 75 (1994): 626–32.
Bayley, J.C., T.P. Cochran, and C.B. Sledge. The weight-bearing
shoulder: The impingement syndrome in paraplegics. J Bone
JT Surg 69-A (1987): 676–8.
Bracken, M.B., and T.R. Holford. Effects of timing of
methylprednisolone or naloxone administration on recovery of
segmental and long-tract neurological function in NASCIS 2. J
Neurosurg 79 (1993): 500–7.
Bracken, M.B., M.J. Shepard, T.R. Holford, et al.
Administration of methylprednisolone for 24 or 48 hours or
tirilazad mesylate for 48 hours in the treatment of acute spinal
cord injury: Results of the Third National Acute Spinal Cord
Injury Randomized Controlled Trial. JAMA 277 (1997):
1597–1604.
Brown, M.J., W.A. Gordon, and K. Ragnarsson.
Unhandicapping the disabled: What is possible? Arch Phys
Med Rehabil 68 (1987): 206–9.
Brown, P.J., R.J. Marino, G.J. Herbison, and J.F. Ditunno, Jr.
The 72-hour examination as a predictor of recovery in motor
complete quadriplegia. Arch Phys Med Rehabil 72 (1991):
546–8.
Burns, S.P., D.G. Golding, W.A. Rolle, et al. Recovery of
ambulation in motor-incomplete tetraplegia. Arch Phys Med
Rehabil 78 (1997): 1169–72.
Campbell, A. Subjective measures of well-being. Am
Psychologist 31 (1976): 117–24.
Cohen, M.E., T.P. Sheehan, and G.J. Herbison. Content validity
and reliability of the International Standards for Neurological
Classification of Spinal Cord Injury. Top Spinal Cord Injury
Rehabil 1 (1996): 15–31.
Colorado Spinal Cord Injury Early Notification System.
Understanding Spinal Cord Injury. Denver, CO: Colorado
Department of Public Health and Environment, 1995.
CLINICAL PRACTICE GUIDELINES 27
Cook, D.J., G.H. Guyatt, A. Laupacis, et al. Rules of evidence
and clinical recommendations on the use of antithrombotic
agents. Antithrombotic Therapy Consensus Conference.
[Review] Chest 102 (1992): 3055–115.
Cotler, J.M., G.J. Herbison, J.F. Nasuti, et al. Closed reduction
of traumatic cervical spine dislocation using traction weights
up to 140 pounds. Spine 18 (1993): 386–90.
Crago, P.E., W.D. Memberg, M.K. Usey, et al. An elbow
extension neuroprosthesis for individuals with tetraplegia.
IEEE Transactions Rehabil Engineering 6 (1998): 1–6.
Craig Hospital. Functional Goals at Specific Levels of
Spinal Cord Injury. Englewood, CO: Craig Hospital, 1989.
Crozier, K.S., V. Graziani, J.F. Ditunno, Jr., et al. Spinal cord
injury: Prognosis for ambulation based on sensory
examination in patients who are initially motor complete. Arch
Phys Med Rehabil 72 (1991): 119–21.
Curt, A., and V. Dietz. Ambulatory capacity in spinal cord
injury: Significance of somatosensory evoked potentials and
ASIA protocol in predicting outcome. Arch Phys Med Rehabil
78 (1997): 39–43.
Dam, H.Q., R.J. Marino, M.E. Cohen, et al. Motor recovery
during the first month after incomplete cervical spinal cord
injury. [Abstract]. J Spinal Cord Med 20 (1997): 143.
Daverat, P., M.C. Sibrac, J.F. Dartigues, et al. Early prognostic
factors for walking in spinal cord injuries. Paraplegia 26
(1988): 255–61.
Davidoff, G., E. Roth, M. Guarracini, et al. Function limiting
dysthetic pain syndrome among spinal cord injury patients: A
cross-sectional study. Pain 29 (1987): 39–48.
Davidoff, G., R. Werner, and W. Waring. Compressive
mononeuropathies of the upper extremity in chronic
paraplegia. Paraplegia 29 (1991): 17–24.
DeVivo, M.J. Discharge disposition from Model Spinal Cord
Injury Care System rehabilitation programs. Arch Phys Med
Rehabil 80 (1999): in press.
DeVivo, M.J., P.L. Kartus, R.D. Rutt, et al. The influence of age
at time of spinal cord injury on rehabilitation outcome. Arch
Neurol 47 (1990): 687–91.
DeVivo, M.J., R.M. Skewchuk, S.L. Stover, et al. A cross-
sectional study of the relationship between age and current
health status for persons with spinal cord injuries. Paraplegia
30 (1992): 820–7.
Diener, E., R.A. Emmons, R.J. Larsen, et al. The satisfaction
with life scale. J Personality Assessment 49 (1985): 71–4.
Dijkers, M. Quality of life after spinal cord injury: A meta-
analysis of the effects of disablement components. Spinal
Cord 35 (1997): 829–40.
Ditunno, J.F., Jr., M.E. Cohen, C. Formal, et al. Functional
outcomes. In Spinal Cord Injury: Clinical Outcomes from
the Model Systems, edited by S.L. Stover, G.G. Whiteneck, and
J.A. DeLisa, 170–184. Gaithersburg, MD: Aspen, 1995.
28 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY
Ditunno, J.F., Jr., S.L. Stover, M.M. Freed, et al. Motor
recovery of the upper extremities in traumatic quadriplegia: A
multicenter study. Arch Phys Med Rehabil 73 (1992): 431–6.
Dolan, E.J., C.H. Tator, and L. Endrenyi. The value of
decompression for acute experimental spinal cord compression
injury. J Neurosurg 53 (1980): 749–55.
Evans, R.L., R.D. Hendricks, R.T. Connis, et al. Quality of life
after spinal cord injury: A literature critique and meta-analysis
(1983–92). J Am Paraplegia Soc 17 (1994): 60–6.
Fabian, E.S. Using quality-of-life indicators in rehabilitation
program evaluation. Rehabil Counseling Bull 34 (1991):
344–56.
Feinstein, A.R. Clinical Epidemiology. In The Architecture of
Clinical Research. Philadelphia: W.B. Sanders, 1985.
Fiedler, R.C., and C.V. Granger. Uniform data system for
medical rehabilitation: Report of first admissions for 1996.
Am J Phys Med Rehabil 77 (1998): 69–75.
Folman, Y., and W. el Masri. Spinal cord injury: Prognostic
indicators. Injury 20 (1989): 92–3.
Fuhrer, M.J. The subjective well-being of people with spinal
cord injury: Relationships to impairment, disability, and
handicap. Topics Spinal Cord Injury Rehabil 1 (1996):
56–71.
Geisler, F.H., F.C. Dorsey, and W.P. Coleman. Recovery of motor
function after spinal-cord injury: A randomized, placebo-
controlled trial with GM-1 ganglioside. N Engl J Med 324
(1991): 1829–38.
Gerhart, K.A., E. Bergstrom, S. Charlifue, et al. Long-term
spinal cord injury: Functional changes over time. Arch Phys
Med Rehabil 74 (1993): 1030–4.
Gerhart, K.A., and B. Corbett. Uninformed consent: Biased
decision-making following spinal cord injury. Health Care
Ethics Committee Forum 7 (1995): 110–21.
Gerhart, K.A., J. Koziol-McLain, S.R. Lowenstein, et al. Quality
of life following spinal cord injury: Knowledge and attitudes of
emergency care providers. Ann Emergency Med 23 (1994):
807–12.
Graziani, V., K.S. Crozier, G.J. Herbison, et al. Strength
recovery in the three levels of zone of partial preservation in
motor complete quadriplegia after one year postinjury.
[Abstract] J Am Paraplegia Soc 15 (1992): 122.
Hallin, R.P. Followup of paraplegics and tetraplegics after
comprehensive rehabilitation. Paraplegia 6 (1968): 128–34.
Hammell, K.W. Spinal cord injury, quality of life, occupational
therapy: Is there a connection? Br J Occup Ther 58 (1995):
151–7.
Herbison, G.J., S.A. Zerby, M.E. Cohen, et al. Motor power
differences within the first two weeks post-SCI in cervical
spinal cord-injured quadriplegic subjects. J Neurotrauma 9
(1992): 373–80.
Hill, J.P. Building strength through function and function
through strengthening. In Spinal Cord Injury: A Guide to
Functional Outcomes in Occupational Therapy.
Rehabilitation Institute of Chicago Procedure Manual,
edited by J.P. Hill and S. Intagliata, 45–7. Rockville, MD:
Aspen, 1986.
Kendall, F.P., and E.K. McCreary. Muscles, Testing, and
Function. 3rd ed. Baltimore: Williams and Wilkins, 1983.
Kilgore, K.L., P.H. Peckham, M.W. Keith, et al. An implanted
upper extremity neuroprosthesis. Followup of five patients. J
Bone Jt Surg-Am 79 (1997): 533–41.
Krause, J.S., and N.M. Crewe. Chronological age, time since
injury, and time of measurement: Effect on adjustment after
spinal cord injury. Arch Phys Med Rehabil 72 (1991):
91–100.
Laman, H., and G.J. Lankhorst. Subjective weighting of
disability: An approach to quality-of-life assessment in
rehabilitation. Disabl Rehabil 16 (1994): 198–204.
Lanig, I.S., L.M. Chase, K.L. Lester, et al. A Practical Guide
to Health Promotion After Spinal Cord Injury.
Gaithersburg, MD: Aspen Publishers, 1996.
Lehman, A.F. The well-being of chronic mental patients:
Assessing their quality of life. Arch Gen Psychiatr 40
(1983): 369–73.
Levi, R., C. Hultling, and A. Seiger. The Stockholm spinal cord
injury study: 2 associations between clinical patient
characteristics and postacute medical problems. Paraplegia
33 (1995): 585–94.
Llewellyn, G. Adults with an intellectual disability: Australian
practitioners’ perspectives. Occupational Therapy J Res 11
(1991): 323–5.
Lomas, J. Making clinical policy explicit: Legislative
policymaking and lessons for developing practice guidelines.
Int J Technol Assess in Health Care 9 (1993): 11–25.
Mange, K.C., J.F. Ditunno, Jr., G.J. Herbison, et al. Recovery
of strength at the zone of injury in motor complete and motor
incomplete cervical spinal cord injured patients. Arch Phys
Med Rehabil 71 (1990): 562–5.
Mange, K.C., R.J. Marino, P.C. Gregory, et al. Course of motor
recovery in the zone of partial preservation in spinal cord
injury. Arch Phys Med Rehabil 73 (1992): 437–41.
Maynard, F.M., G.G. Reynolds, S. Fountain, et al. Neurological
prognosis after traumatic quadriplegia: Three-year experience
of California regional spinal cord injury care system. J
Neurosurg 50 (1979): 611–6.
McDaniel, R.W., and C.A. Bach. Quality of life: A concept
analysis. Rehabil Nurs Res 3 (1994): 18–22.
Noreau, L., and R.J. Shephard. Spinal cord injury, exercise,
and quality of life. Sports Med 20 (1995): 226–50.
Palmer, R.H. Process-based measures of quality: The need for
detailed clinical data in large health-care databases. Ann
Intern Med 127 (1997): 733–8.
Parke, B., R.D. Penn, S.M. Savoy, et al. Functional outcome
after delivery of intrathecal baclofen. Arch Phys Med Rehabil
70 (1989): 30–2.
Penrod, L.E., S.K. Hegde, and J.F. Ditunno, Jr. Age effect on
prognosis for functional recovery in acute traumatic central
cord syndrome (CCS). Arch Phys Med Rehabil 71 (1990):
963–8.
Piepmeier, J.M., and N.R. Jenkins. Late neurological changes
following traumatic spinal cord injury. J Neurosurg 69
(1988): 399–402.

President’s Advisory Commission on Consumer Protection and
Quality in the Health-Care Industry. Quality First: Better
Health Care for All Americans: Final Report to the
President of the United States. Baltimore, MD: U.S.
Government Printing Office, 1998.
Rintala, D.H., and E.P. Willems. Behavioral and demographic
predictors of postdischarge outcomes in spinal cord injury.
Arch Phys Med Rehabil 68 (1987): 357–62.
Robnett, R.H., and J.A. Gliner. Qual-OT: A quality-of-life
assessment tool. Occup Ther J Research 15 (1995):
198–214.
Rogers, J.C., and J.J. Figone. Traumatic quadriplegia:
Followup study of self-care skills. Arch Phys Med Rehabil 61
(1980): 316–21.
Roth, E.J., M.H. Lawler, and G.M. Yarkony. Traumatic central
cord syndrome: Clinical features and functional outcomes.
Arch Phys Med Rehabil 71 (1990): 18–23.
Sackett, D.L. Rules of evidence and clinical recommendations
in the use of antithrombotic agents. Chest 95 (2 Suppl)
(1989): 25–45.
Schneider, E.C., and A.M. Epstein. Influence of cardiac-surgery
performance reports on referral practices and access to care:
A survey of cardiovascular specialists. N Engl J Med 335
(1996): 251–6.
Staas, W.E., Jr., C.S. Formal, A.M. Gershkoff, et al.
Rehabilitation of the spinal cord-injured person. In
Rehabilitation Medicine: Principles and Practice, edited by
J.A. DeLisa, B.M. Gans, D.M. Currie, L.H. Gerber, J.A.
Leonard, Jr., M.C. McPhee, and W.S. Pease, 898–9.
Philadelphia: J.B. Lippincott Company, 1993.
Stensman, R. Severely mobility-disabled people assess the
quality of their lives. Scand J Rehab Med 17 (1985): 87–9.
Stover, S.L., K.M. Hall, J.A. DeLisa, et al. System benefits. In
Spinal Cord Injury: Clinical Outcomes from the Model
Systems, edited by S.L. Stover, G.G. Whiteneck, and J.A.
DeLisa, 317–26. Gaithersburg, MD: Aspen, 1995.
Tarlov, I.M. Spinal cord compression studies: Time limits for
recovery after gradual compression in dogs. Arch Neurol
Neurosurg Psychology 71 (1954): 588–97.
Tate, D.G., W. Stiers, J. Daugherty, et al. The effects of
insurance benefits coverage on functional and psychosocial
outcomes after spinal cord injury. Arch Phys Med Rehabil 75
(1994): 407–14.
Tator, C.H., and M.G. Fehlings. Review of the secondary injury
theory of acute spinal cord trauma with emphasis on vascular
mechanisms. [Review] J Neurosurg 75 (1991): 15–26.
Treanor, W.J., E. Moberg, and H.J. Buncke. The hyperflexed
seemingly useless tetraplegic hand: A method of surgical
amelioration. Paraplegia 30 (1992): 457–66.
Trigiano, L.L., and J. Mitchell. Physical rehabilitation of
quadriplegic patients. Arch J Phys Med Rehabil 51 (1970):
592–4, 613.
U.S. Preventive Health Services Task Force. Guide to the
Clinical Preventative Services. 2nd ed. Baltimore: Williams
and Wilkins, 1996.
Vanden Bergh, A., M. Van Laere, S. Hellings, et al.
Reconstruction of the upper extremity in tetraplegia:
Functional assessment. Surgical procedures and rehabilitation.
Paraplegia 29 (1991): 103–12.
CLINICAL PRACTICE GUIDELINES 29
Vaugeois, A. Occupational therapy in the treatment of spinal
cord injuries. In Management of Spinal Cord Injuries, edited
by R.F. Bloch and M. Basbaum, 348–66. Baltimore, MD:
Williams and Wilkins, 1986.
Wang, D., R. Bodley, P. Sett, et al. A clinical magnetic
resonance imaging study of the traumatized spinal cord more
than 20 years following injury. Paraplegia 34 (1996): 65–81.
Warren, L., J.M. Wrigley, W.C. Yoels, et al. Factors associated
with life satisfaction among a sample of persons with
neurotrauma. J Rehabil Res Dev 33 (1996): 404–8.
Waters, R.L., R.H. Adkins, J.S. Yakura, et al. Motor and
sensory recovery following complete tetraplegia. Arch Phys
Med Rehabil 74 (1993): 242–7.
Waters, R.L., R.H. Adkins, J.S. Yakura, et al. Motor and sensory
recovery following incomplete paraplegia. Arch Phys Med
Rehabil 75 (1994a): 67–72.
Waters, R.L., R.H. Adkins, J.S. Yakura, et al. Motor and
sensory recovery following incomplete tetraplegia. Arch Phys
Med Rehabil 75 (1994b): 306–11.
Waters, R.L., J.S. Yakura, R.H. Adkins, et al. Recovery
following complete paraplegia. Arch Phys Med Rehabil 73
(1992): 784–9.
Welch, R.D., S.J. Lobley, S.B. O’Sullivan, et al. Functional
independence in quadriplegia: Critical levels. Arch Phys Med
Rehabil 67 (1986): 235–40.
Whiteneck, G.G., S.W. Charlifue, H.L. Frankel, et al. Mortality,
morbidity, and psychosocial outcomes of persons spinal cord
injured more than 20 years ago. Paraplegia 30 (1992a):
617–30.
Whiteneck, G.G., S.W. Charlifue, K.A. Gerhart, et al.
Quantifying handicap: A new measure of long-term
rehabilitation outcomes. Arch Phys Med Rehabil 73 (1992b):
519–26.
World Health Organization. International Classification of
Impairments, Disabilities, and Handicaps: A Manual of
Classification Relating to the Consequences of Disease.
Geneva: World Health Organization, 1980.
World Health Organization. ICDH-2—The International
Classification of Impairments, Activities, and
Participation: A Manual of Dimensions of Disablement and
Functioning. [Beta-1 Draft for Field Trials]. Geneva: World
Health Organization, 1997.
Wu, L., R.J. Marino, G.J. Herbison, et al. Recovery of zero-grade
muscles in the zone of partial preservation in motor complete
quadriplegia. Arch Phys Med Rehabil 73 (1992): 40–3.
Yarkony, G.M., E.J. Roth, A.W. Heinemann, et al. Spinal cord
injury rehabilitation outcomes: The impact of age. J Clin
Epidemiol 41 (1988a): 173–7.
Yarkony, G.M., E.J. Roth, A.W. Heinemann, et al. Functional
skills after spinal cord injury rehabilitation: Three-year
longitudinal followup. Arch Phys Med Rehabil 69 (1988b):
111–4.
Yarkony, G.M., E.J. Roth, A.W. Heinemann, et al Benefits of
rehabilitation for traumatic spinal cord injury: Multivariate
analysis in 711 patients. Arch Neurol 44 (1987): 93–6.
Young, W. Secondary injury mechanisms in acute spinal cord
injury. J Emergency Med 11 (Suppl 1) (1993): 13–22.
30 OUTCOMES FOLLOWING TRAUMATIC SPINAL CORD INJURY

Index
Activity of daily living (ADL)—10, 11, 22 Functional—v, 1, 2, 7, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19,
Adaptive devices—12, 13, 15, 16, 17 20, 21, 22, 26
Agency for Health Care Policy and Research (AHCPR)—2 Goals—1, 9, 10, 21
Ambulation—8, 9, 11, 13, 14, 15, 16, 17, 18, 19, 20, 21 Independence—v, 1, 7, 9, 10, 12, 26
Independence Measure (FIM)—2, 11, 12, 13, 14, 15, 16,
American Spinal Injury Association Impairment Scale—8, 9, 22,
17, 18, 19, 20, 21, 22
23, 24, 25
Outcomes—v, vii, 1, 2, 3, 10, 11, 12, 13, 14, 15, 16, 17,
ASIA A—22, 23, 24, 25
18, 19, 20, 21, 22
ASIA B—9, 22, 23, 24, 25
Status—1, 21
ASIA C—9, 22, 23, 24, 25
Goal Setting—v, 1, 7, 10, 24
ASIA D—9, 22, 23, 24, 25
Grooming—11, 13, 14, 15, 16, 17, 18, 19, 20
Antigravity muscle—8
Guidelines development process—ix, 2
Assessment—v, 1, 7, 8, 9, 10, 11, 12, 21, 24
Home modifications—12
Attendant care—vii, viii, 11, 13, 21
Homemaking—11, 13, 14, 15, 16, 17, 18, 19, 20
Bathing—11, 13, 14, 15, 16, 17, 18, 19, 20
Inclusion criteria—4
Bladder function—11, 13, 14, 15, 16, 17, 18, 19, 20
Index Medicus—3
Bowel—11, 13, 14, 15, 16, 17, 18, 19, 20
Internal validity—4
Caregivers—11, 12, 23
International Standards for Neurological and
Carpal tunnel—9
Functional Classification—1, 7
Case—v, 3, 4
Ischemia—7
Control—3, 4
Legal review—2
Managers—v, vii, 3
Reports—3 Life-care planners—vii
Series—3, 4 Life satisfaction—24, 25
Cauda equina injuries—8 Lipid peroxidation—7
CINAHL—3 Medical complications—12, 21
Claims adjusters—vii MEDLINE—2, 3
Clinical trials—3 Meta-analyses—2, 3, 23, 24
Cognitive impairment—vii, 10 Methodology—ix, 2, 3, 4
Communication—11, 13, 14, 15, 16, 17, 18, 19, 20 Evidence-based—2, 3
Evidence tables—ix, 2, 3, 4
Community—v, 9, 23, 22
Team—ix, 2, 3, 4
Ambulators—9
Integration—v, 23 Methylprednisolone—7
Concomitant injuries—10, 12 Mobility—11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 23, 24,
Contractures—v, 11 Model SCI System—8, 21, 22, 23, 24
Control groups—4 Motor—v, 1, 7, 8, 9, 21, 23, 26
Function—7, 8, 9, 21
Controlled trials—5
Functional incomplete injuries—23
Craig Handicap Assessment and
Recovery—v, 1, 7, 8, 26
Reporting Technique (CHART)—2, 11, 23, 24
National Academy of Sciences’ Institute of Medicine—2
Depression—vii
National Spinal Cord Injury Statistical Center (NSCISC)—11, 12,
Diener’s Satisfaction with Life Scale—25
13, 14, 15, 16, 17, 18, 19, 20, 21, 23, 25
Dressing—11, 13, 14, 15, 16, 17, 18, 19, 20, 21
Nerve entrapments—9, 21
Dysesthetic—21
Neurogenic pain—21
Eating—11, 13, 14, 15, 16, 17, 18, 19, 20
Neurological—1, 4, 7, 8, 9, 21
Edema—7 Assessment—8
Energy conservation—10 Deficit—7
Equipment—13, 14, 15, 16, 17, 18, 19, 20, 21 Examination—1, 7
Medical—12 Impairment—7
Requirements—vii, 12 Recovery—4, 7, 8, 9
Expert consensus—v, 5, 12, 21, 23 Status—1, 7, 8, 9, 21
Explication—2 Observational studies—3
External validity—4 Pain—12, 21, 24
 CLINICAL PRACTICE GUIDELINES 31

Paraplegia—8, 9, 23, 24, 25 Social—v, 1, 4, 7, 12, 23, 24, 26

Pin sensation—9 Integration—v, 1, 4, 7, 23, 24, 26
Pre-existing medical conditions—vii, 10 Participation—1, 12, 23
Role barriers—24
Pressure—11, 13, 14, 15, 16, 19, 20, 21
Relief—11, 13, 14, 15, 16, 17, 18, 19, 20 Spasticity—vii, 21
Ulcers—21 Spinal column stability—7
Propulsion—13, 14, 15, 16, 17, 18, 19, 20 Spinal cord compression—7
Psychological adjustment—21 Sprains—21
Quality of life—v, viii, 1, 3, 7, 12, 23, 24, 26 Standing—11, 13, 14, 15, 16, 17, 18, 19, 20
Quality of research—ix, 2, 3, 4 Strains—21
Randomization methods—5 Syringomyelia—9
Randomized trials—3, 4, 5 Tendonitis—21
Recovery of ambulation—9 Tetraplegia—8, 9
Rehabilitation—v, vii, 1, 4, 21 High—23, 25
Outcomes—v Low—23, 25
Process—v, 1, 4, 24 Motor complete—8
Team—v, vii Third-party payers—v, 3
Respiratory—11, 13, 14, 15, 16, 17, 18, 19, 20 Toileting—21
Sackett rating scheme—4 Transfers—11, 13, 14, 15, 16, 17, 18, 19, 20, 21
Sample size—4, 21 Transportation—11, 13, 14, 15, 16, 17, 18, 19, 20
Scientific evidence—ix, 4, 5 Uniform Data System (UDS)—11, 22
Secondary complications—7, 10, 24, 25 World Health Organization (WHO)—10, 23
 Administrative and financial
support provided by
PARALYZED VETERANS OF AMERICA
801 Eighteenth Street, NW
Washington, DC 20006

July 1999